Number of Guests: 300
Entries (1) to (300)...
Visitor: Shauna
Reference: my mom
Location: HB, california
WebSite:
Web Info:
Contact: diverchk02@aol.com
Date: Wed, Dec 24, 2003 at 00:01:26 (EST)
Comments: hello, my name is shauna. i am 15 years old
and currently a sophmore in high school. i was born with PFFD. i had a leg
lengthening when i was in 5th grade and again in 8th grade. i am almost fully
recovered, almost. I am very active in playing softball and cheerleading
for my school. I have gone through everything frome doctors and medical problems
to friends and school. If anyone, parents or kids, needs any help or advice,
feel free to e-mail me. i would be happy to respond.
|
Visitor: Jennifer
Reference: search on google
Location: SLC, UT
WebSite:
Web Info:
Contact: moondah99@msn.com
Date: Mon, Dec 08, 2003 at 23:03:23 (EST)
Comments: My 2 year old daughter, Ashlyn was born on
Nov 23, 2001. Until her birth we had no idea that there was any kind of birth
defect. She was born with unilateral PFFD. I am not sure of the class, she
is missing her right femur, fibula and outside two toes. Her right foot is
at about the level of her left knee. We have had nothing done except had
her fitted with an extention type prosthetic. She has actually been the most
active of my 4 children. She started rolling early and crawling early. She
has been the cause of many near heart attacks. She just never stops. She
has been seen every 3-6 months at the Intermountain Shriner's. Right now
we are trying to decide between our options. The options we have been given
are to leave it, for now, to have the symes amputation done or the Van Ness
procedure, which we have completely ruled out. So bascially, amputate now
or wait? I think we have decided to wait. It is a difficult decision to make.
I am interested in learning about Dr. Moseley's PFF Device. If anyone has
any opinion or information they would like to share or just to talk with
someone in a similar situation. I would love to make a new friend.
|
Visitor: Jessica Sharpe
Reference: searched
Location: New Hampshire
WebSite:
Web Info:
Contact: mysylas21@hotmail.com
Date: Fri, Dec 05, 2003 at 22:58:58 (EST)
Comments: My 17 month old son has pffd(class B). We have
been thinking about having his left leg lengthen. Has anybody had this done?
If so please contact me. I would love to hear your personal story. thank
you
|
Visitor: Jessica Sharpe
Reference: searched
Location: New Hampshire
WebSite:
Web Info:
Contact: mysylas21@hotmail.com
Date: Fri, Dec 05, 2003 at 22:47:09 (EST)
Comments: My 17 month old son have pffd.
|
Visitor: kim mason
Reference:
Location: jonesville, Louisiana
WebSite:
Web Info:
Contact: knm4006@aol.com
Date: Mon, Nov 17, 2003 at 19:09:56 (EST)
Comments: my son is now 10 months old and we use the
Shriners Hospital in Shreveport, LA. Jacob has class D PFFD and will have
to have his foot amputated, only they want to wait until he is around 4 or
5 years of age. If anyone can help us with treatment opptions or Doctor referrals
it would greatly help. Thank you and God bless.
|
Visitor: Cherie
Reference:
Location: CAnada
WebSite:
Web Info:
Contact: cherie72ca@yahoo.ca
Date: Sat, Nov 15, 2003 at 18:53:59 (EST)
Comments: Was just wondering if anyone out there has
PFFD and has gone through a pregnancy. I am currently 61/2 months pregnant
and would really like to speak to someone who has gone through it
|
Visitor: Farsiani
Reference:
Location: Iran
WebSite:
Web Info:
Contact: farsiani_mahmood@yahoo.com
Date: Fri, Nov 14, 2003 at 14:34:40 (EST)
Comments: Hi everyone.I just want to drop a line to
thank the owner of this site and all those who have been generous enough
to share their experinces with others who suffer the same problem.Thanks
to reading all stories here and the ones I recieve via mail ,we have been
able to keep our spirit up.My daughter Nadia was born with pffd on her left
leg(class d) and coxa vara on the right one.It was Ginette Mckenzie (I met
her on this site)who encouraged us to let doctors have surgeries for her
coxa vara.We did and now at least one problem is solved.I also recieved advice
from other members not to let our daughter feel different from others.We
sent her to kindergarten two months ago with lots of fears and worries.On
the first day she was made fun of by a naughty boy for her toy leg(the
prosthesis).We did not go to that much trouble to make her forget it.She
just laughed it off herself.Now after two months ,according to her teacher,she
has a leading role in class .I believe that she owes this high spirit to
all members and guests of this site. Living in a developing country,we are
always looking for the best medical treatment,but if not found,we try to
strengthen her character.We will also be very pleased to stay in touch with
you.
|
Visitor: Brandy
Reference: search
Location: PA
WebSite:
Web Info:
Contact: sbmoyer@earhtlink.net
Date: Mon, Oct 06, 2003 at 13:08:00 (EDT)
Comments: Hi everyone! I was wondering if there is anyone
out there that is deal with PFFD as an adult? My husband is 28 right now
and he is having some problems but it seems the only doctors who deal with
this are childrens doctors.
|
Visitor: ginette mckenzie
Reference:
Location: north west england
WebSite:
Web Info:
Contact: mckenzie794@hotmail.com
Date: Mon, Sep 15, 2003 at 20:30:24 (EDT)
Comments: hi my 5 year old son michael has pffd to the
extent his right foot fell level with the left knee we have been to all the
lengthening surgeons in he UK and Michaels been inhospital in 6 different
countries searching for an alternative to amputation, it seems only Dr Paley
in Baltimore can help us we are now in USA and Michaels first surgery went
well if anyone wants to share experiences please contact us
|
Visitor: Janice
Reference: yahoo
Location: earth
WebSite:
Web Info:
Contact: janice7846@yahoo.com
Date: Tuesday, Sep 02, 2003 at 21:36:54 (EDT)
Comments: Oops forgot to post my new email. I lost my
old one when I killed my website.
|
Visitor: Janice
Reference: yahoo
Location: florida
WebSite:
Web Info:
Contact:
Date: Tuesday, Sep 02, 2003 at 21:26:40 (EDT)
Comments: Well it was the website Dr. Paley did NOT want
you too see. I guess he has some things to hide... like the truth. So he
sent a law firm and threatened to sue me to remove the site. He puts me in
a wheelchair and then he threatens to sue me??? What kind of person is he?
All I had was my little website, it helped me deal with the pain and depression
and the loss of walking now that my site is gone I feel empty inside. Haven't
I suffered enough by this man? Sue me? Ruin my body, ruin my life, ruin my
credit? I can't work now what else does he want, is he going to take away
my food stamps? Well that's Dr. Paley.... Think about it... I'm in a wheelchair
but Paley is doing waaaaaaahhhhhhhhhhh she wrote a bad website about me
waaaaahhhhhhhh. I'll sue her!!! What kind of man is that? Don't despair Dr
Paley the bad website is all gone and you cant stop watching me. I'm feeling
harassed. Doesn't he have better things to do with his time than to watch
my webpage?
|
Visitor: mary brown
Reference: just looking for information on PFFD
Location: Maryland
WebSite:
Web Info:
Contact: brsparky@adelphia.net
Date: Mon, Sep 01, 2003 at 12:10:01 (EDT)
Comments: My niece was born on 5/23/03 with PFFD. She
goes to the Shriner's Hospital in Philadelphia, PA on Sep 5, for her first
visit.
|
Visitor: Jeanette Wilkinson
Reference:
Location: Canada
WebSite:
Web Info:
Contact: nette@cogeco.ca
Date: Sun, Aug 24, 2003 at 23:15:04 (EDT)
Comments: This site has been a life line for me since
I learned my son had pffd when I was 5 1/2 months pregnant. After reading
all the information I knew he was going to be okay. I was hoping that someone
could let me know about their first hand experiences with Dr. Moseley's pff
device. We are trying to find someone who is using it with a child under
5 to help us make some thoughtful decisions regarding treatment for our son.
Thanks in advance. nette@cogeco.ca
|
Visitor: Janice W
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Sun, Aug 17, 2003 at 00:32:00 (EDT)
Comments: Wanna know about Dr Paley... check out my
website... the webpage he doesn't want you to see.
http://home.att.net/~janice7846/index.htm
|
Visitor: Rhonda Moore
Reference:
Location: West Virginia
WebSite:
Web Info:
Contact: angelgirll70@aol.com
Date: Tuesday, Aug 12, 2003 at 19:53:57 (EDT)
Comments: My son was born with PFFD. We were stunned
to discover this after he was born. We took him to Shriners in Lexington
Ky, they told us that amputation was our only option. There was no such thing
as leg lengthing is what the doctor said. We found Dr. Dror Paley two months
later, he said that he could help our little boy. Our little boy has had
the Super Hip surgery in Febuary of 2002, lengthing has not yet begun. For
parents who don't know there is such a thing as a second opioion, please
heed my advice, take the second opinion.
|
Visitor: Janice W
Reference: yahoo
Location: FLORIDA
WebSite:
Web Info:
Contact: janicemw1@juno.com
Date: Wed, Jul 16, 2003 at 15:52:11 (EDT)
Comments: Hello, I am looking to contact Mark Moseley.
Can anyone help me? I need a prosthetic made and I think he can help. Thanks.
|
Visitor: Tatum Slade
Reference:
Location: Arizona
WebSite:
Web Info:
Contact: luvnlizzy@msn.com
Date: Thurs, Jul 10, 2003 at 03:45:19 (EDT)
Comments: Tatum had her leg rotated 4 yrs ago. She had
to have it rotated again 2 yrs ago. Her tendons in her ankle were released
twice and they are very stiff. She now walks with a stiff leg with her
prosthesis. After many surgeries her leg is not functioning as we had hoped.
We are now contemplating amputation. If anyone has any comments about this
we would love to hear from you.
|
Visitor: Angela Berry
Reference: My Mother bought me here
Location: South Carolina
WebSite:
Web Info:
Contact: Clemsonberry@aol.com
Date: Wed, Jul 02, 2003 at 22:28:28 (EDT)
Comments: My daughter is 1year 5mo. old she has PFFD
in her right leg. We are seeing Dr. Paley. Angela
|
Visitor: Emma Burns
Reference:
Location: Kent, UK
WebSite:
Web Info:
Contact: emmaburns@monksmanor.freeserve.co.uk
Date: Sun, Jun 29, 2003 at 17:54:28 (EDT)
Comments: Hello everyone! I've been reading messages
on this site for years but it's the first time I've posted one. My little
girl, Vanessa, who is six, has 1a PFFD by Dr Paley's classification - she's
5.5cm short in her left leg right now, predicted to be 9.5 or 15 cm short
by the time she's grown-up, depending on which doctor you believe. What I
was hoping is that other people with 1a children who have been treated by
Dr Paley could email me about what happened and how they got on and what
the outcome has been. I really need help in making up my mind about what
to do next. Thank you very much!
|
Visitor: John Merritt
Reference: Google Search
Location: Melbourne, Florida / USA
WebSite:
Web Info:
Contact: terdburd@yahoo.com
Date: Sat, Jun 28, 2003 at 20:52:12 (EDT)
Comments: I am a unilateral PFFD
|
Visitor: dude
Reference: googling
Location: uk
WebSite: Hardwood Conservatories
Web Info: Hardwood Conservatories
Contact: submit@smileys.co.uk
Date: Thurs, May 15, 2003 at 19:30:37 (EDT)
Visitor: Erica
Reference: internet search
Location: Trenton, NJ
WebSite:
Web Info:
Contact: SammiMom1097@hotmail.com
Date: Thurs, May 08, 2003 at 14:14:22 (EDT)
Comments: My daughter was diagnosed with PFFD when she
was 3 days old. She is now 5 and undergoing her first lenghening (of her
right femor). She is being treated at Shriner's Hospital in Philadelphia.
There is a 3 inch difference between her right and left legs. All is going
well so far, although it is a bit overwelming. I had no idea that there are
so many other children born with this. This is a wonderful site and please
keep up the great work. To any other parents: Please feel free to e-mail
me if you have any questions about lenghening. I am more than happy to share
any info I have with others. Thank you. Erica
|
Visitor: debbie
Reference: internet
Location: Columbus
WebSite:
Web Info:
Contact: JDJchm@aol.com
Date: Wed, Apr 23, 2003 at 14:34:10 (EDT)
Comments: I have an 18-month old with what appears to
be a class I PFFD. We have been considering the hip surgery by Dr. Paley.
I was wondering if any others would share their experiences, as he has been
doing it for 5 years.
|
Visitor: Mahmood Farsiani
Reference:
Location: Iran
WebSite:
Web Info:
Contact: Farsiani_mahmood
Date: Fri, Apr 11, 2003 at 04:19:19 (EDT)
Comments: Hello everybody. I have been here before with
a different e_mail.My daughter ,Nadia,will be 5 in Jun.She has pffd on her
left leg and coxa vara on right.She underwent a surgery for her coxa vara
nine months ago and the doctor is going to take out the pins next month.In
her left leg,she has a very short and deformed femur which is not conneceted
to the pelvis.She can walk with prosthesis with little trouble but I'm sure
that she will have a lot of problems in future.We have recieved some medical
advices from kind members of this pffdvsg group but her doctor ,who is one
of the best orthopaedists in Iran ,has not offered an acceptable solution
yet.I am worried about losing the time as she is growing up.I don't know
what exactly can be done for her in other countries. Although we can't use
our medical insurance outside our country,I am ready to pay for it if I can
be sure about the result.The other problem is that my wife is against amputation
or any kind of rough treatment.Unfortunately she doesen't know English and
can't use this site.If there is anyone who knows Farsi ,I do really appreciate
your kindness to help me in preparing her for the probable surgeries in future.
|
Visitor: Cindy Kenyon
Reference: visited before
Location: Toledo, Ohio
WebSite:
Web Info:
Contact: r121898@earthlink.net
Date: Wed, Apr 09, 2003 at 23:42:08 (EDT)
Comments: Just wanted to let people know that we have
changed email addresses. We have visited the site before. Cody is now 4 1/2
years old. He is doing very well. We are hoping to be getting a new prosthesis
shortly. In case you don't remember Cody and us, Cody was born in Dec of
1998. He had a Symes Amputation in Nov 1999, rod put in Jun of 2001, rod
removed in Jan of 2002. Any questions or if you just want to talk, please
feel free to email me. Thanks!!!
|
Visitor: Kim Mason
Reference:
Location: Jonesville, Louisiana
WebSite:
Web Info:
Contact: KNM400@bellsouth.net
Date: Tuesday, Apr 08, 2003 at 03:48:42 (EDT)
Comments: My son Jacob was diagnosed with PFFD at birth.
He is now 3 months old and doing very well. We are using the Shriner's Hospital
in Shreveport Louisiana and has gone to one appointment, his next one will
be in Jul. We did not find out anything on what type of treatment we will
be using because he is still to young. I would love to hear from other parents
or anyone with the same condition. Jacob's right femur is probably about
2 inches shorter than his left leg, but he moves it great (especially when
he is mad and throwing a fit)! Jacob is our first and only child, he is our
special little gift! His father and I want him to have the best future only
we have no idea where to start this long jurney. We both are so scared of
what the future may bring for our son, but what makes it even harder is not
knowing anyone that has gone through this. If you could give us any information
or just talk with us, we would greatly appreciate it. God Bless!! Kim, Adam
and Jacob
|
Visitor: Jacquie Madis
Reference: searching
Location: California
WebSite:
Web Info:
Contact: jacquiemadis@sbcglobal.net
Date: Wed, Mar 26, 2003 at 18:06:11 (EST)
Comments: My daughter is 13 years old, with PFFD. She
is missing her fibula bone and her right leg is much shorter than her left.
She has undergone the Ilizeroz, but unfortunately it was unsuccessful. We
are now having to face the symes amputation. If anyone has any experience
with this procedure and/or their child or themselves with PFFD, I would love
to share thoughts. I am especially interested in those who have gone through
their teen years and if anyone has any advice to give me to help my daughter.
Thank you so much for being here.
|
Visitor: Sara de Neve
Reference:
Location: Escondido, California
WebSite:
Web Info:
Contact: sjdeneve@hotmail.com
Date: Mon, Mar 17, 2003 at 03:02:12 (EST)
Comments: Hi, my son was born on 2-21-01 and has P.F.F.D.
He is also an identical twin. I think he has a more mild case based on my
readings here on this website but I am not sure. Does anyone know about the
different classifications? Our doctor has never mentioned any to us. Anyway,
when he was born his flexed foot (the heel) came right around his mid calf
on his good leg and the doctors told us it would always be that way unless
of course lengthening procedures were done. Well now he is two and it comes
much closer to his ankle! He is on his second prosthesis (one that he just
slides his foot into and then it fits snuggly into his shoe). When he was
born his hip had a hole in it and the doctor said he did not know what it
was but that the hip did not look normal and if it did not improve we would
eventually have to amputate and get a permanate prosthesis because you cannot
grow a femur into a bad hip. A year later they did another x-ray and found
that the hip was slowly turning from cartiledge into bone and the hole that
had been there before was mysteriously gone. The doctor said he had never
seen a hole just disapear like that before. So we are just waiting for the
hip to completly turn to bone and then if it is good we can do the legnthening
procedures. But our doctor says the first surgery will not happen untul he
is about 5 years old. Does this seem kind of late to anyone? He really is
doing great though! His next prosthesis will be an articulating one at the
ankle and I am so excited! I am so glad I found this website and would love
to hear from anyone who want's to write me and confirm that I am not alone
in this world! Thanx, Sara
|
Visitor: Robyn
Reference: Search Engine
Location: Riley
WebSite:
Web Info:
Contact: CRiley27@yahoo.com
Date: Mon, Mar 10, 2003 at 10:23:32 (EST)
Comments: Hello all, I have been here before, but do
not talk too much. My daughter now 3 will be starting surgery this october.
As I type she is with my husband having a CAT Scan. On her hip. If it looks
good, we are going to begin lengthining. If not, then the doctor will do
some work on her hip first. Right now there is about a 4 inch difference,
he thinks it will be about 11 inches in all. (She wanted daddy to take her,
I am home with my 2 year old) Anyhow, I am looking for all the friends I
can make, who can help guide us throught this journey. And hope I can offer
the same in return. Also, is anyone here from the NJ area? Thank you all
so very much! Robyn
|
Visitor: Attilio
Reference: search engine
Location: Toronto, Canada
WebSite:
Web Info:
Contact: attperna@mobility.com
Date: Wed, Feb 12, 2003 at 11:52:07 (EST)
Comments: great site ! keep up the great work
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: ChuckBerg@msn.com
Date: Tuesday, Feb 11, 2003 at 16:01:42 (EST)
Comments: Ooopss....McKenna's surgery was in Jan. of
2001. You'd think I could atleast get the dates right...It was quite an
experience, and we met some wonderful people along the way, and it has changed
our lives in so many ways!!! Again thank you to all of you who called, emailed,
visited, and even lived with us during our lengthening, and we would love
to return the favor to anyone, so call us collect at 763-494-8823 or email
us at ChuckBerg@msn.com and we will share everything we know to date. Good
luck and God Bless!! Chuck, Karla, Dylan & McKenna
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: ChuckBerg@msn.com
Date: Tuesday, Feb 11, 2003 at 14:40:38 (EST)
Comments: I was very interested to read the article that
was added to this website on 01/22/03 called PFFD Research by Janet to Info
page. There was some very good information there, but I did notice that there
was no mention of Limb Lengthening as a possible solution. Our little girl
McKenna has had this procedure done back in 2000 with great success, and
I am quite certain there have been several medical articles published and
during our last visit to Baltimore to see Dr. Paley they were in the process
of shooting a documentary on this procedure. Just wondering how this information
was left out of the article, and, since we have met dozens of families on
our journey that are also doing the limb lengthening preceedure, how is there
no more current information available to be researched. If anyone else has
a thought on this topic feel free to email me at ChuckBerg@msn.com, or just
post another link on this website so we can share all the info. we have to
date...Thanks!! Good luck & God Bless!! Chuck, Karla, Dylan & McKenna
Berg
|
Visitor: Cindy Krise
Reference: web search
Location: Orange, California
WebSite:
Web Info:
Contact: ckrise714@aol.com
Date: Sat, Feb 08, 2003 at 01:49:31 (EST)
Comments: I have found this site and all the information
on PFFD very helpful. My daughter Andreya was born on May 2, 2001 with PFFD.
We are currently on the search for a physician to perform her lengthening.
She is our little princess and have big hopes and dreams for her. We are
very optimistic that everything is going to be ok and work out. The information
and stories on this site have been such a big help. I am so thankful for
finding this site.
|
Visitor: Tonya Kliewer
Reference: frequent visitor
Location: Arkansas, U.S.
WebSite:
Web Info:
Contact: toniboli@hotmail.com
Date: Thurs, Feb 06, 2003 at 04:29:19 (EST)
Comments: Tried to post before, but was unable due to,
I believe, server problems. I want to thank the webmasters for this site,
which has been a lifeline for me. My son was born with PFFD on Christmas
Day 1988. I intend to do Eddy's story sometime, hopefully in the 'near' future.
|
Visitor: Tammy and Jason Antonyk
Reference:
Location: BC Canada
WebSite:
Web Info:
Contact: the4antonyks@shaw.ca
Date: Wed, Jan 15, 2003 at 21:48:48 (EST)
Comments: Our daughter just turned 6 months and we were
just at the Childrens Hospital. We have been told that her hip bone has not
developed right and may not be able to go through the lengthening procedure
but may have to consider the Van Ness Rotationplasty. If anyone out there
knows anything about this procedure or is going through it could you please
help us with any information.Thank you Tammy and Jason
|
Visitor: REAJEAN BLACKSTON
Reference:
Location: SHREVEPORT, LA
WebSite:
Web Info:
Contact: REAVONN318@AOL.COM
Date: Fri, Nov 22, 2002 at 23:38:39 (EST)
Comments: EMAIL ADDRESS- REAVONN318@AOL FOR CONTACT ABOUT
BELOW ENTRY
|
Visitor: REAJEAN BLACKSTON
Reference:
Location: SHREVEPORT, LA
WebSite:
Web Info:
Contact:
Date: Fri, Nov 22, 2002 at 23:28:46 (EST)
Comments: MY DAUGHTER, LAVENDER WAS BORN 12-26-01 AND
IS NOW 11 MOS OLD AND HAVE BEEN DIAGNOSED WITH PFFD AT BIRTH. I AGREE WITH
EVERYONE WHO SAYS THEY NEED HELP. IT IS NOT EASY AT ALL ESPECIALLY WHEN THERE
ARE SO MANY OPTIONS BUT I AM REALLY CONCERNED ABOUT SOME OF THE LONG TERM
EFFECTS. I WOULD LIKE FOR MY DAUGHTER TO LIVE A HEALTHY AND NORMAL LIFE WITH
NO COMPLICATIONS. I WOULD LOVE TO HEAR FROM SOME OF THE PARENTS BECAUSE I
DO NEED SOME INSPIRATION AND HELP.
|
Visitor: Tiffany Colchin
Reference: search engine
Location: Springfield, Ohio
WebSite:
Web Info:
Contact: t_nick212001@yahoo.com
Date: Fri, Nov 15, 2002 at 00:29:02 (EST)
Comments: My son Jordan was born Jan 5, 2002 with PFFD.
He also is missing his left leg almost completely. There is no bone in his
stump from the PFFD, merely a partial femoral head. His pelvis where his
femurs should go in are severly underformed which is requiring yet another
surgery. His knee is also fused completely in his one good leg. I was so
surprised at first because nobody had expected it and I had never even heard
of it. Being a young mother I was scared because I had no clue how I was
going to raise 2 children, let alone one with multiple physical handicaps.
But now Jordan is 10 months old and just the smartest and friendliest little
boy I have ever known. His sister adores him and is always the first one
to explain to our visitors that her baby brother has only one leg and it's
really little. I am glad that she has taken this all so well. There are times
that she asks the inevitable 'why' and is never satisfied with the simple
'that's how God made him' answer. I hope that when she is old enough to read
that she comes to this site and sees that Jordan is not the only little baby
with a 'little leg' and that she can get some sort of understanding from
this. Thank you for creating this site. Sincerely Tiffany Colchin and Family
|
Visitor: Susan
Reference: Searching PFFD
Location: New York now living in Oslo Norway
WebSite:
Web Info:
Contact: Nasus@online.no
Date: Sat, Nov 02, 2002 at 08:30:41 (EST)
Comments: Wonderful Site, wish it was around in 1974
when my son was born with PFFD. Back in those days one had to overcome the
Dr's who wanted to 'do it there way or noway' Support group then ? Nope..
Info ? nope. I had to go myself dressed in 'Dr Whites' to the medical libary
to seek info. keep up the good work !
|
Visitor: CINDY GUSTAVSON
Reference: WEB SEARCH
Location: WEAVERVILLE, N.C.
WebSite:
Web Info:
Contact: CINDYGUSTAVSON@CHARTER.NET
Date: Fri, Oct 11, 2002 at 15:31:53 (EDT)
Comments: I HAVE A 10 YEAR OLD SON WITH PFFD. WE ARE
SEEN AT SHRINER'S HOSPITAL IN GREENVILLE S.C.. WOULD LIKE ANY INFORMATION
ABOUT THE CLASSIFICATIONS OF PFFD. THANKS SO MUCH.
|
Visitor: Natalie Albert
Reference: web search
Location: Houston, TX
WebSite:
Web Info:
Contact: forestrychick@hotmail.com
Date: Mon, Oct 07, 2002 at 01:53:54 (EDT)
Comments: My daughter Maya born 7-12-02 has been diagnosed
as having severe bilateral PFFD (class D). She is scheduled to go to the
Shriner's Hospital in Nov but the wait is killing me. I would love to hear
from anyone who is familiar with situations such as hers.
|
Visitor: Renee' M. James
Reference: searching for info. on PFFD
Location: Lake Charles, Louisiana
WebSite:
Web Info:
Contact: RJsdbb@AOL.com
Date: Mon, Sep 30, 2002 at 11:59:04 (EDT)
Comments: I am the mother of 4: Shelby 8(the only girl),
David 7, and 2yr old twins Blake and Braedan. Blake was born with PFFD and
our option at this time is amputation and fusion of the knee. What little
femur he does have has been broke since birth and his hip joint and socket
don't meet. We have an appointment on Nov. 5, 2002 to begin schedueling surgery.
We are using Shriner's Hospital in Shreveport Louisiana. What we know as
of now is they will do the amputation and fusion soon, they will also use
the bones in the foot to graph the break in the femur. We will not be able
to do his hip surgery until he is 5yrs. They made us shoes with extension
2 times, but to no prevail. It caused him alot of pain. Now don't get me
wrong, Blake is a remarkable child. He walks on the knee of the good leg
and the foot of the PFFD side(it's the perfect length). He can climb on more
cabinets using his arms. But, there are alot of allowances to be made, for
him and his twin. I haven't been able to speak to any one who has experienced
any of this, so if any you have a chance please e-mail me at RJsdbb@AOL.com
Thank-You for this site I had nowhere else to go... Renee' James
|
Visitor: Tammy and Jason Antonyk
Reference:
Location: BC Canada
WebSite:
Web Info:
Contact: the4antonyks@shaw.ca
Date: Wed, Sep 18, 2002 at 16:39:14 (EDT)
Comments: sorry we entered our email in wrong. Our right
one is as above. sorry for any inconvinience.
|
Visitor: Jason and Tammy Antonyk
Reference:
Location: BC Canada
WebSite:
Web Info:
Contact: the4antonyk's@shaw.ca
Date: Fri, Sep 06, 2002 at 01:37:49 (EDT)
Comments: Our email address has changed if anyone has
tried to contact us. Our daughter turned two months yesterday. She was born
with PFFD and Fibular Hememilia. She is growing quick. She was born 8.1 lbs
and is now 12 lbs. If anyone has any advice or just would like a friendly
family to talk to, please email us. Thanks Jason
|
Visitor: Tracey Arnold
Reference: Yahoo
Location: Pennsylvania
WebSite:
Web Info:
Contact: jaded_btch@hotmail.com
Date: Fri, Aug 30, 2002 at 19:10:50 (EDT)
Comments: I am thrilled to once again find this site.
Good to read all the updates and stories.
|
Visitor: Tammy Lathrup
Reference: search on google
Location: Michigan
WebSite:
Web Info:
Contact: tlathrup@wideopenwest.com
Date: Sat, Aug 17, 2002 at 01:19:26 (EDT)
Comments: how can I add a page for my daughter I think
this would be a good project for me an her to work on together and would
like to know where I can find a place where she could chat with other people
so she can understand better her self she is 10 years old. Thank You, Tammy
Lathrup
|
Visitor: Leatta Workman
Reference: web search
Location: Carthage, MO USA
WebSite:
Web Info:
Contact: workman@execs.com
Date: Fri, Aug 16, 2002 at 00:31:32 (EDT)
Comments: Due to amniotic band syndrome, I had pffd on
my left leg, my left arm ends at the elbow, and my right ends below a fused
elbow with two fingers. I am married and have 'perfect' biological children.
I am a professional woman and belive I have excelled because of my disability,
not in spite of it. We worst thing about PFFD is people trying to tell you
what you cannot do and trying to fix you. I had 22 'fixing' surgeries which
have left me with daily pain and little hope of wearing a prosthesis. Parents
need to be very cautious of what docs want and consider long term issues
such as aging, pain, and maintenance surgeries.
|
Visitor: Mahmood farsiani
Reference: I have a child with pffd and coxa vara
Location: Iran
WebSite:
Web Info:
Contact: farsiani1@yahoo.com
Date: Wed, Aug 07, 2002 at 13:05:16 (EDT)
Comments: I do need enough information before a let any
docter have a surgery on my daughter!
|
Visitor: Dion Woods
Reference:
Location: Seattle, WA
WebSite:
Web Info:
Contact: dionmarie@attbi.com
Date: Fri, Jul 26, 2002 at 21:55:38 (EDT)
Comments: I have a daughter Alena who was born on Nov
25, 2001. She has pffd Atkins type D bilaterally with no hip sockets and
one tiny piece of femur in one leg and none in the other. She is not a candidate
for lengthening because she doesn't meet the criteria. Her feet are clubbed
but not too severely she is having her acquiles tendons lengthened when she
is nine months old to flatten her feet so that she can use them and if all
goes well she may be able to walk she will just be low to the ground.. Does
anyone know of anybody with Pffd bilaterally...I know it is rare but I am
beginning to wonder just how rare.???
|
Visitor: Kristina Jackson
Reference:
Location: California
WebSite:
Web Info:
Contact: SHARKIE4@msn.com
Date: Fri, Jul 26, 2002 at 03:00:43 (EDT)
Comments: My son was diagnosed with PFFD at 3 months.
He has just celebrated his first birthday, and has begun using a modified
shoe to help him walk. Thank you to everyone who has shared their story.
They have truly touched my heart.
|
Visitor: Sandy Clabes
Reference: pffd
Location: Oklahoma
WebSite:
Web Info:
Contact: collin317@people.com
Date: Thurs, Jul 25, 2002 at 20:10:32 (EDT)
Comments: our 2 year old daughter was born with pffd.
She has had syme amputation and doing well. now needs osteotomy, knee
fusion...close growth plates. Lots of confusion between Mds as to timing
of procedures . Parents need help.
|
Visitor: Julie Honeycutt
Reference: browsing
Location: Grand Rapids,MIch
WebSite:
Web Info:
Contact: jhoneycutt@mfbrc.com
Date: Sun, Jul 21, 2002 at 18:04:13 (EDT)
Comments: thank you to all of you that have shared your
experiences as adults with PFFD regardless of treatment. Thank you also some
of you for agreeing to speak with younger folks!! In corresponding with a
gal from the Uk and Brazil, was curious if anyone has been treated with the
Albizzia nail and what was their experience? I understand it cnnot be placed
until almost full growth has occured in the bone.
|
Visitor: Jason & Tammy
Reference: Internet
Location: BC Canada
WebSite:
Web Info:
Contact: spa2300@shaw.ca
Date: Mon, Jul 15, 2002 at 13:31:35 (EDT)
Comments: We were blessed with another daughter on Jul
4th. We now have two. This daughter was born with PFFD and also Fibular
Hemimelia(her lower leg bone the Fibula is attached at her ankle but only
reaches approx. half way to her knee). The doctors told us that usually babies
are born with a syndrome, she is otherwise perfect. We have been to our
Children's hospital already and seen the leading expert in leg extentions.
He has given us hope for the future. I have read some comments written on
site of parents not excepting their child's condition. We have another daughter
whose perfectly healthy and I love each of my daughters equally and with
all my heart. Our children will grow up right if they are treated as if they
don't have limitations. We are very new to this so if anyone would like to
email us, we would like to get to know more people, hopefully close to us,
but in any case would love to here how you progresses through. Thank you
and give your child a hug for me as I hope you wish for mine. Jason
|
Visitor: Einar Dag L Digernes
Reference: seaching the web
Location: Norway, Stord
WebSite:
Web Info:
Contact: einar.dag.l.digernes@akerkvaerner.com
Date: Tuesday, Jul 09, 2002 at 08:02:25 (EDT)
Comments: Our daughter,5 years old with PFFD Right Femur
Aitken AL1, is undergoing a femur lengthening with an ilizarov device. Her
surgery was in Febr 1. 2002, strecthed 9 cm until Apr 17. 2002. Our Dr. in
Oslo says we can choose if she shall have a cast or still have the ilizarov
device for the last 6 weks. Does anyone have any experience so please send
me a mail.
|
Visitor: Connie Coward
Reference: internet search
Location: Jacksonville, FL
WebSite:
Web Info:
Contact: ladycoward@yahoo.com
Date: Mon, Jul 01, 2002 at 15:01:05 (EDT)
Comments: Our daughter, CJ, was born 5/19/00 with bilateral
PFFD Aitken type A. She is a patient at Shriners Hospital in Tampa and we
(I, my husband, and her doctor) are currently trying to determine the best
treatment for her. Her femurs are short and bowed, but appear to be normal
otherwise. Right now the question is whether to perform as osteotomy to
straighten the femurs. Since a bilateral type A is so rare, there is very
little information on treatment. Would be VERY interested in communicating
with others with bilateral type A. Great website, a true God-send!
|
Visitor: Debbie Lindahl
Reference:
Location: Michigan
WebSite:
Web Info:
Contact: weeniesmom@yahoo.com
Date: Wed, Jun 19, 2002 at 14:46:42 (EDT)
Comments: My son, Jimmy, is currently undergoing a leg
lenthening with Dr. Paley in Baltimore. His surgery date was Apr 25, 2002
and he has gotten just short of 2 inches so far. The difference in his legs
before surgery was about 4 3/4 inches. Dr. Paly was hoping to be able to
get 3 inches with this surgery, but as of right now, Jimmy is doing so well
that we may be able to go for more....maybe even the entire difference. Dr.
Paley is a wonderful doctor, but another reason Jimmy is doing so well is
because of the support we have found at the Ronald McDonald House here in
Baltimore. There were 5 families staying here that were going through
lengthenings and the support network here has been invaluable. I would totally
recommend Dr. Paley and and the Ronald McDonald House. Please feel free to
contact me for more info.
|
Visitor: Jacquie
Reference: searching
Location: Petaluma, CA
WebSite:
Web Info:
Contact: JMadis1234@aol.com
Date: Thurs, May 30, 2002 at 02:23:59 (EDT)
Comments: My 12 yr. old daughter has PFFD and had the
leg lengthening done 3 years ago, but it was unsuccessful. Now I am having
to convince her and her Dad that an amputation is necessary, as the Dr. has
said...Dad has talked her into denying it all and feeling it's better to
keep her foot and walk on crutches than to get a prostesis...I don't know
what to do.
|
Visitor: Michael Behlke
Reference: google.com
Location: Grafton Ohio
WebSite:
Web Info:
Contact: belchermlb72@hotmail.com
Date: Thurs, May 23, 2002 at 20:01:10 (EDT)
Comments: I was born with PFFD in 1972. I was searching
to learn more about it when i stumbled across this site.
|
Visitor: Sybil
Reference: searching
Location: South Carolina
WebSite:
Web Info:
Contact: jimginn1@charter.net
Date: Tuesday, May 07, 2002 at 14:08:36 (EDT)
Comments: Just wanted to give you my new e-mail address:
jimginn1@charter.net Thanks sybil
|
Visitor: Ryan Brenden
Reference: research on residency project
Location: Nebraska
WebSite:
Web Info:
Contact: rbrenden55110@yahoo.com
Date: Fri, Apr 26, 2002 at 19:32:32 (EDT)
Comments: I am a unilateral PFFD with Van Nes Rotation
Plasty. I am completing my residency in prosthetics and will work in Nebraska.
Just checking things out. I didn't realize there was a website devoted this
topic.
|
Visitor: Sheril
Reference:
Location: Canada
WebSite:
Web Info:
Contact: newhorizon@sympatico.ca
Date: Tuesday, Apr 23, 2002 at 09:58:40 (EDT)
Comments: I am a 35 year woman with 3 children, I have
PFFD and would like other parents to know that their children can lead happy
normal lives. My husband and I have been together 15 years and have a 13yr
old boy, 5yr old girl and 1yr old boy all happy healthy children. If anyone
wants to discuss anything with me, please email me.
|
Visitor: Rebecca
Reference: handed parents guide for PFFD
Location: Australia
WebSite:
Web Info:
Contact: bekk@fl.net.au
Date: Thurs, Apr 18, 2002 at 05:59:39 (EDT)
Comments: My baby is now 6mths old. We only found out
that he has a femur (only about 1cm) this week which has placed him in the
PFFD club!! Before this we believed that his condition was very rare and
none of the medical experts had come across his particular condition. Would
love to chat with anyone.
|
Visitor: Kathy
Reference: internet search
Location: UK
WebSite:
Web Info:
Contact: kmhouse@btinternet.com
Date: Mon, Apr 15, 2002 at 18:15:49 (EDT)
Comments: Finally got a name for my condition from my
new prosthetist and set about looking on the net for info. I am fifty and
feel amazed to realise there are others in the same/similar situation. I
have felt totally isolated for all this time! I look forward to learning
more and hearing from others. My family kept me isolated for years due to
their feelings of guilt but am happy to say I am now married and have two
healthy teenagers! Still have a deep longing to know why!!
|
Visitor: Dawn Rause
Reference: have signed before
Location: Raleigh, NC
WebSite:
Web Info:
Contact: dawnrause@yahoo.com
Date: Thurs, Apr 04, 2002 at 09:19:26 (EST)
Comments: Just wanted to let you know that our 6 1/2
yr. old son, Jesse, is getting ready to have his next major lengthening surgery
on Apr 9th with Dr. Paley. Our last lengthening was two years ago and we
got 2 inches of length. This time we hope to get more as his discrepancy
is app. 6-7 inches. Jesse's attitude is great this time because he really
really wants a longer leg. Hopefully this will make all the difference. Please
keep us in your prayers. Thanks!
|
Visitor: Linda
Reference: reply from info request
Location: Minneapolis, MN, USA
WebSite:
Web Info:
Contact: LindaExcel@aol.com
Date: Wed, Apr 03, 2002 at 14:50:14 (EST)
Comments: wish to receive e-mails but am having dificulty
joining Yahoo site. Please forward my address to your e-mail list, thanks.
|
Visitor: Sally Borghese
Reference: corrected address
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: wwdovew@aol.com
Date: Tuesday, Apr 02, 2002 at 00:44:28 (EST)
Comments: I evidently entered my email address wrong.
This is correct.
|
Visitor: Sally Borghese
Reference: searching for answers
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: wwdovew@ao.com
Date: Mon, Apr 01, 2002 at 23:28:04 (EST)
Comments: I have a 26 month old granddaughter with PFFD.
She also has a problem with her teeth, in that the teeth on the same side
as the PFFD are not as high in her mouth as the teeth on the other side.
Does anyone know of this situation with PFFD? As side note: she will have
her first lengthening probably next fall. We are waiting until she is able
to tell us exactly where she hurts and how it feels.
|
Visitor: Sandy
Reference: desperately looking for answers
Location: Mississippi
WebSite:
Web Info:
Contact: ssenter@yahoo.com
Date: Sat, Mar 30, 2002 at 01:49:10 (EST)
Comments: my daughter,Mattison, will be 3 on april 14.
we found out she had PFFD when she was 13 months old. I am happy to have
found this web site. It is almost impossible to find any info on this condition.
From the posts that i have read ,is it always the right leg that has the
short femor? It's Mattison's right leg also.
|
Visitor: Samantha
Reference: Website recommended
Location: Midlands, U.K
WebSite:
Web Info:
Contact: tulula31@yahoo.co.uk
Date: Wed, Mar 13, 2002 at 16:57:11 (EST)
Comments: I am in my early thirties and had a problem
with accepting my condition since I was a child. I have always felt 'different'
and unaccepted by society yet long to be average and normal. I walk very
badly and have had a lifetime of difficulties regarding prosthetic limbs
that either do not fit very well or have poor cosmesis. My current prosthetic
limb is over twelve years old and I have had four since then that have been
of no use to me.I am at a loss and wonder if anyone else has had similar
problems or how other people with PFFD obtain a prosthesis of an acceptable
standard? Any advice or suggestions would be gratefully recieved. I am also
very curious as to what caused this condition? Although I am in my thirties,
nothing has ever been explained to me and it was only last year that I was
told what my condition was caused. As silly as it sounds it made me cry as
I felt relived that I can eventually put a name to my condition after many
years of asking but never being told.
|
Visitor: frances
Reference:
Location:
WebSite:
Web Info:
Contact: balammers@msn.com
Date: Thurs, Mar 07, 2002 at 12:24:22 (EST)
Comments: I AM AN OLDER PFFD WHO HAS HAD FEW DIFFICULTIES
LIVING A VERY NORMAL LIFE. I ALSO HAVE A MEDICAL BACKGROUND AND WAS A THERAPIST
FOR 45 YEARS. I WOULD BE GLAD TO ANSWER ANY QUESTIONS OR JUST COMMUNICATE
WITH ANYONE INTERESTED IN PFFD.
|
Visitor: Sybil Ginn
Reference: Searching
Location:
WebSite:
Web Info:
Contact: ginnsurfer@statecom.net
Date: Sun, Mar 03, 2002 at 09:22:46 (EST)
Comments: My granddaughter is 7 days old and has a short
right femur. We don't know anything about what this means or what to expect.
|
Visitor: Gini
Reference:
Location:
WebSite:
Web Info:
Contact: tfieldofdreams@aol.com
Date: Mon, Feb 11, 2002 at 11:42:46 (EST)
Comments: I have a daughter adopted 3 months ago from
China with PFFD. I am interested in talking to another parent with a child
this age.
|
Visitor: Whonetha B. Edwards
Reference:
Location: Mansfield, Ohio
WebSite:
Web Info:
Contact:
Date: Tuesday, Feb 05, 2002 at 10:44:21 (EST)
Comments: I forgot to add from my first message that
my grandson has already had the prosthetic device and shoe with a lift. He
was fitted 1-1/2 years ago. It worked fine for a while; but now he's not
wearing it. Thlanks
|
Visitor: Whonetha B. Edwards
Reference: search
Location: Mansfield, Ohio
WebSite:
Web Info:
Contact: wedwards@ci.mansfield.oh.us
Date: Tuesday, Feb 05, 2002 at 10:37:01 (EST)
Comments: My grandson has proximal femoral focal deficiency
and he is now 4. We were told when he was born that this is the age he should
be getting a lengthening operation; and I have just read from my search,
he should have started at age 3. He has been going to the Cleveland Clinic,
Cleveland, Ohio and Children's Hospital in Columbus, Ohio. We still don't
have any answers and we need a specialist to help us. What should we do?
Thanks. You can also mail information to 349 Fourth Avenue, Mansfield, Ohio
44905. We have insurance that will cover this.
|
Visitor: PFFDvsg Webmaster
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Mon, Feb 04, 2002 at 15:49:39 (EST)
Comments: Hi all......The PFFDvsg has now moved to
www.nls.net/mp/pffdvsg. Any old links to www.ohio.net are no longer valid.
Thanks for stopping by........Mike
|
Visitor: Marie Propes
Reference:
Location: Florida
WebSite:
Web Info:
Contact: propes4@bellsouth.net
Date: Sat, Feb 02, 2002 at 23:17:34 (EST)
Comments: I can't figure out how to join your mailing
list. For some reason I can't get Yahoo to verify my e-mail address. Help!
|
Visitor: Marie Propes
Reference:
Location: Florida
WebSite:
Web Info:
Contact: mcpropes@sar.med.navy.mil or propes4@bellsouth.net
Date: Wed, Jan 30, 2002 at 13:36:17 (EST)
Comments: I have a 15 year old son born with PFFD. My
son had a Symes amputation at 3 1/2 years of age. He plays basketball and
enjoys a normal healthy life. It hasn't been easy though. I would love to
chat with other parents. I'm very happy to have found this website.
|
Visitor: Angela Davyduke
Reference: searching
Location: Canada
WebSite:
Web Info:
Contact: angcory@cable-lynx.net
Date: Wed, Jan 23, 2002 at 19:00:53 (EST)
Comments: Hi,my name is Angela. I am 22 years old and
I was born with PFFD. I have had about 19 major surgeries on my legs. I was
also born with a twisted right hip, no ligaments in my right knee, a bow
in my right leg,...etc. I had an amazing doctor and an amazing family to
thank today for all their help and support. I have 2 legs (only one inch
difference verses about a foot)and I can do almost anything. I just want
to wish everyone who has to go through this procedure the very best. If you
wish to email me please do so, my email is angcory@cable-lynx.net
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
Location: Maple Grove, MN. - USA
WebSite:
Web Info:
Contact: ChuckBerg@msn.com
Date: Wed, Jan 16, 2002 at 01:41:03 (EST)
Comments: Greetings all, and Happy New Year!!! We just
wanted to drop you all a note letting you know about McKenna's progress.
She finished lengthening on Apr 21, 2001, and since then she has had the
Illiz. removed, and has had physical theropy about 2 to 3 days a week to
regain the range of motion for her right knee. As of today, 1-15-02, she
has just about full range of motion, and still only wears about a 1/2 lift
inside her shoe. She runs, climbs, swims and does about everything she
wants...Anyways we plan to return to Baltimore soon to visit Dr. Paley and
his team to get a checkup. We have come so far that it is hard to believe
that it was a year ago on 01-10-01 that we started this journey, and we sure
couldn't have done it without the support from all our family and
freinds...Especially the new freinds we made in Baltimore!!!! And Dr. Paley
and his staff have been just wonderful to work with!!!!Our thoughts and prayers
go out to all of you, and if there is anything we can do just email us back
at ChuckBerg@msn.com, or call us collect at (763)494-8823 anytime day or
night, as we want to repay all of you who have shared so much to help us
get through this. Also, if you are just trying to get information for a loved
one, or just had a child of your own and want more info. just give us a call
and we will share everything we know, and try to help in any way we can....Good
luck to you all, and God Bless!!!! Chuck, Karla, Dylan & McKenna
|
Visitor: Cindy Gustavson
Reference:
Location: North Carolina, Usa
WebSite:
Web Info:
Contact: cindybgustavson@mindspring.com
Date: Tuesday, Jan 15, 2002 at 20:39:02 (EST)
Comments: I am still looking for information on pffd.
We have had no surgery at this point. Justin is now 10. Having trouble at
school with keeping up with class work. Also any information about 504's?
Thanks so much. God bless.
|
Visitor: Judith Hamer
Reference: searched for proximal focal femoral deficiency
Location: Exeter England
WebSite:
Web Info:
Contact: Hamers@14blenheim.fsnet.co.uk
Date: Sun, Jan 13, 2002 at 07:32:01 (EST)
Comments: I am 11 years old with PFFD and am searching
for answers to my dislocated hip which resulted after my 3rd lengthening
|
Visitor: Cindy Gustavson
Reference: looking for information on line.
Location: usa
WebSite:
Web Info:
Contact: cindybgustavson@mindspring.com
Date: Tuesday, Jan 08, 2002 at 20:45:41 (EST)
Comments: I have a 10 year old son with pffd. Does any
one have information or experience that it may affect them in learning?
|
Visitor: r.e. clifton
Reference: GOOGLE
Location: wooster oh.
WebSite:
Web Info:
Contact: RECLIFTON@JUNO.COM
Date: Tuesday, Dec 04, 2001 at 20:30:38 (EST)
Comments: I WAS DIAGNOSED WITH PFFD IN 1960 WHEN I WAS
BORN .I DID NOT HAVE ANY CORRECTIVE SURGURY BUT I HAVE WORN A LIMB EXTENSION
ON MY LEFT LEG SINCE 1972 AND LIVE QUITE A NORMAL LIFE.IF YOU HAVE ANY QUESTIONS
E-MAIL ME- BY THE WAY BOTH OF MY CARS HAVE A CLUTCH AND I KNOW HOW TO USE
THEM!
|
Visitor: Dr.Veklich
Reference: http://network54.com/Forum/message?forumid=87713&messageid=1005564616
Location: Ukraine, Kiev
WebSite:
Web Info:
Contact: ladisten@carrier.kiev.ua
Date: Wed, Nov 14, 2001 at 04:09:53 (EST)
Comments: Dear parents! During I was searching the Web
I found this Virtual Support Group. I have treated children with PFFD in
Ukraine and I did never amputate the leg of a child. As I know it is normal
medical practice for surgeons of UK. But it is not normal! I can help this
children but lot of parents do not know about the way to save the leg. I
have information on site about PFFD treatment, please, look at it:
http://www.orthopaedic.com.ua/english/pffd.htm Could you help me to give
this information to parents? Please, do not ignore this message you can help
me save children. If you need any information from me. I am ready to answer
all your questions. Hope to hear from you soon Dr.Veklich
ladisten@carrier.kiev.ua
|
Visitor: Frank Gratke
Reference:
Location: Wisconsin
WebSite:
Web Info:
Contact: Gratke@execpc.com
Date: Wed, Nov 07, 2001 at 23:01:31 (EST)
Comments: Son kevin born 5-5-92 PFFD Aiken Class D right
leg, Have had new brace , swinging below foot with a flex foot at bottom,
he can move very nicely, the swinging motion and the action of Flex foot
make him reralitivily mobil, waiting for elctronic stimulation technics to
approve before any surgery. The new brace has made waiting possible.
|
Visitor: Frank Gratke
Reference:
Location: Wisconsin
WebSite:
Web Info:
Contact: Gratke@execpc.com
Date: Wed, Nov 07, 2001 at 23:00:57 (EST)
Comments: Son kevin born 5-5-92 PFFD Aiken Class D right
leg, Have had new brace , swinging below foot with a flex foot at bottom,
he can move very nicely, the swinging motion and the action of Flex foot
make him reralitivily mobil, waiting for elctronic stimulation technics to
approve before any surgery. The new brace has made waiting possible.
|
Visitor: Frank Gratke
Reference:
Location: WIsconsin
WebSite:
Web Info:
Contact: Gratke@execpc.com
Date: Wed, Nov 07, 2001 at 22:55:20 (EST)
Comments: No comment at this time.....
|
Visitor: Frank Gratke
Reference:
Location: WIsconsin
WebSite:
Web Info:
Contact:
Date: Wed, Nov 07, 2001 at 22:54:42 (EST)
Comments: No comment at this time.....
|
Visitor: Frank Gratke
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Wed, Nov 07, 2001 at 22:54:20 (EST)
Comments: No comment at this time.....
|
Visitor: Tatum Slade
Reference:
Location: Arizona
WebSite:
Web Info:
Contact: djslade@Qwest.Net
Date: Sun, Nov 04, 2001 at 18:12:58 (EST)
Comments: Tatum is a 7 year old girl in the 1st grade.
She has a short right leg and has had the van ness rotation at Shriners hospital
in Utah about 2 years ago. She does everything my other children can do but
on crutches. If you have any suggestions how to get her to wear her prosthesis
I would be very thankful.
|
Visitor: ginette mckenzie
Reference:
Location: north west england
WebSite:
Web Info:
Contact: mckenzie@pffd.fsnet.co.uk
Date: Fri, Oct 19, 2001 at 10:03:30 (EDT)
Comments: my son just had surgery which had been planned
to correct the angle of his hip however they discoverd he had a psuedo arthtosis,
a false fibros joint , which has now had to be pinned and we are awaiting
it to heal so we can go on to correct the angle of the hip we are told this
could ruin his chances of being a candidate for lengthening, as his discrepencey
is quite big anyway has anyone had a similar experience, has this happened
to any children that have then gone on to have lengthening? Michael has a
website, www.tum.pwp.blueyonder.co.uk please visit,email me with any comments
or advice
|
Visitor: Ludmila Worman
Reference:
Location: California
WebSite:
Web Info:
Contact: worman@iccas.com
Date: Mon, Oct 15, 2001 at 23:06:15 (EDT)
Comments: Hi, everybody! We have a different E-mail now,
use to be worman@dreamsoft.com. My granddaughter Kasity has PFFD in her right
leg. She is 11 months now, she has her first 5'high shoe and is not doing
too good on it, but we have a great hope for her. I wanted to ask, does anybody
have his chind on disability and what does it do for a child? If it needs
to be done, where should we start? Thank you for all your support, God bless
you, Love, Lu
|
Visitor: Pavel Korsun
Reference: www.yahoo.com
Location: Ukraine
WebSite:
Web Info:
Contact: ladisten@carrier.kiev.ua
Date: Mon, Oct 15, 2001 at 09:31:56 (EDT)
Comments: Dear parents! Veklich Vitaliy do the operation
for children with PFFD. Here all information:
http://www.orthopaedic.com.ua/english/question.htm Pavel pavel@nort.kiev.ua
|
Visitor: Falina Ali
Reference:
Location: Trinidad West Indies
WebSite:
Web Info:
Contact: printart@tstt.net.tt
Date: Thurs, Oct 11, 2001 at 21:59:44 (EDT)
Comments: I saw my name on the guestbook in 1998, just
wrote to inform everyone that my email address changed to printart@tstt.net.tt.
Keep up the great work you all are doing. My daughter Sidi is now 13 years
old and doing great after two leg lengthening and numerous other ones. She
will be having another lengthening at 16 years old (her choice). We are open
to questions or comments.
|
Visitor: YVONNE TOBIN
Reference:
Location: AIRDRIE, SCOTLAND
WebSite:
Web Info:
Contact:
Date: Thurs, Sep 20, 2001 at 08:54:53 (EDT)
Comments: Declan is doing great. His walking and confidence
is getting better every day.We still can't decide on what type of surgery
would be best for him. Declan's dad is convinced that the Van Nes is the
best way forward however I'm still not convinced. JIL from AUSTRALIA, it
was great to hear about your son Jesse. I have not ingnored your message.
I just don't have email at the moment. I will contact you as soon as I do.
Hopefully this will be very soon. I only know of one person in Scotland who
has had the Van Nes done however this child did not have PFFD. He had this
done because he had cancer. I really look forward to speaking with you and
Jesse.
|
Visitor: Angela Davyduke
Reference: research
Location: Alberta, Canada
WebSite:
Web Info:
Contact: n/a
Date: Mon, Sep 17, 2001 at 13:16:24 (EDT)
Comments: I think this is an excellent web site for I
to have PFFD. I am first in the world to have what I had done... in conjunction
with PFFD. I really apreciate this web site for now I know I am not alone.
Thank-you.
|
Visitor: mirjam mooij
Reference:
Location: Holland
WebSite:
Web Info:
Contact: mirjam@hacom.nl
Date: Mon, Aug 20, 2001 at 18:07:24 (EDT)
Comments: Hello, I am so glas with this internet-site.
I live in Holland and our son is born at 11 mai 2001 with BIlateral PFFD.
We have so little information about this. It was a shock for us. Every support
and information about bilateral PFFD is welkom ! Mirjam Mooij
|
Visitor: Stephanie Pecora
Reference: My son has pffd i looked it up on msn
Location: Elko nevada
WebSite:
Web Info:
Contact: Special_one99@hotmail.com
Date: Thurs, Jul 19, 2001 at 19:10:30 (EDT)
Comments: No comment at this time.....
|
Visitor: Stacey
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Wed, Jul 18, 2001 at 09:31:39 (EDT)
Comments: No comment at this time.....
|
Visitor: Robyn
Reference:
Location: NJ
WebSite:
Web Info:
Contact: Robyn72@aol.com
Date: Wed, Jul 11, 2001 at 21:03:33 (EDT)
Comments: Hi everyone, things are well here. I was just
wondering for everyone who has seen Dr. Paley, could you please tell me how
it works if you have him treat your child? What if you arent from Maryland?
Allison is now 21 months old, and she is all over the place! We take her
down to Philly next month, she needs a higher lift for her shoe now. If anyone
has any information that you think would help me, I would love to hear from
you. take care.
|
Visitor: Donna McVeigh
Reference: Google search
Location: New York
WebSite:
Web Info:
Contact: DNPCOFFEE@hotmail.com
Date: Sat, Jun 30, 2001 at 23:42:46 (EDT)
Comments: Hi we are new to the group and just wonted
to say thankyou. Our son was born with short femur syndrome(his right leg
is short and bent)and (his left leg is short with a small bow in it) We are
very glad to have found this group it took a while.We have Doctors telling
us the have seen short they have seen bent but not a short bent femur.We
were woundering if anyone else has seen this.
|
Visitor: marsupial
Reference: google search
Location: washington
WebSite:
Web Info:
Contact: marsupialius@yahoo.com
Date: Fri, Jun 29, 2001 at 22:24:25 (EDT)
Comments: i was born w/ pffd, i'm 25. i had my foot amputated
when i was three. i'm an artist, activist, performer, musician... the thing
that i want to say to parents is 1) have faith in your child's intelligence;
2) help your child nurture a connection and love for her or his body. it
is really hard to go through traumatic medical treatments when you are so
little, and be constantly told to get over it and cope. there is no language
for us to talk about our experiences. people look at us and think we're weird
so we spend all our energy trying to prove we're normal and ignoring our
personal reality. i hope this makes sense. let your child cry. tell them
they're beautiful, and loved.
|
Visitor: jil
Reference: i forget
Location: australia
WebSite:
Web Info:
Contact:
Date: Thurs, Jun 28, 2001 at 23:07:36 (EDT)
Comments: particularly in reply to yvonne tobin's post
- my son jesse is 24. he had a van nes at age 8. he's doing very well. a
fine young man, he drives a car, rides a bike, has a very good job. yvonne,
if you want to email me on the decision issue about van nes vs amputation,
please feel free. jilly@bigpond.net.au
|
Visitor: Tiffany Brown
Reference: Researching PFFD
Location: Louisville, KY
WebSite:
Web Info:
Contact: tffbrown@hotmail.com
Date: Thurs, Jun 28, 2001 at 16:47:27 (EDT)
Comments: Hi my name is Tiffany and I have a daughter
who was born 09/06/1998 with PFFD unilateral left leg. She is going to be
starting the lengthening process early Sept. 2001. I am so happy to have
found this website it has enlightening me on a lot of things. I had been
searching for other people with PFFD. It is such a rare defiency. Please
feel free to e-mail me at tffbrown@hotmail.com
|
Visitor: YVONNE TOBIN
Reference:
Location: AIRDRIE, NORTH LANARKSHIRE, SCOTLAND
WebSite:
Web Info:
Contact: NO ADDRESS/ TEL 01236 830848
Date: Thurs, Jun 28, 2001 at 08:25:30 (EDT)
Comments: Declan was born 29/08/99 with unilateral PFFD
left leg and was fitted with his first straight leg prosthesis at the beginning
of the year. My husband and I could not imagine him ever walking with this
leg however like always he proved us wrong. Declan starting walking within
weeks holding our hands and in the last month he has started walking by himself.
He is so full of life and devilment, you just can't keep up with him. Declan
has 3 options - Van Ness, Symes or to continue using the type of leg he has
already. We are considering the Van Ness option but feel that we do not have
enough information. We would love to hear from anyone who has gone through
the Van Ness or Symes and at what age this surgery was done. Declan's consultant
at Yorkhill would like to start surgery before the end of the year, no matter
what option we finally decide on.We feel that he will be too young to go
through all that however pyschologically we think it may be better. LOUISE
FORD, We have not heard about the Albizzia nail as leg lengthening is not
an option for Declan, but please lets keep in contact.
|
Visitor: federica koller
Reference: i was surfing the web for info on pffd
Location: i live in germany (munich)
WebSite:
Web Info:
Contact: f-koller@t-online.de
Date: Wed, Jun 27, 2001 at 16:58:28 (EDT)
Comments: my son was born in 1992. he has pffd - he had
a lengthening operation in 1997. the next operation is approaching. i wanted
more information on hip dysplasia and on operation techniques with regars
to pffd/ hip abnormalities
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
Location: Maple Grove, MN. - USA
WebSite:
Web Info:
Contact: Grimbold@aol.com
Date: Wed, Jun 27, 2001 at 02:17:38 (EDT)
Comments: Sorry it took so long to post...for some reason
my new cable modem service had problems...anyways, McKenna and Karla have
been home since Apr 21st, and so far everthing is going great!!! See next
post.....
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
Location: Maple Grove, MN. - USA
WebSite:
Web Info:
Contact: Grimbold@aol.com
Date: Wed, Jun 27, 2001 at 02:08:32 (EDT)
Comments: Hello Everyone!!! Our little McKenna has just
finished her first limb lengthening and is home recovering!!!! We just wanted
to drop a note telling you all thank you for your emails and support to Karla
& McKenna while they were in Baltimore with Dr. Paley. It helped to keep
their spirits up while they were there. All in all we gained about 2.625
of length, short of our final goal by .5, but we just put a rubber insert
insider her shoe, and she now wears 2 REGULAR SHOES!!!! The process took
from Jan. 10th 2001 till Apr 23rd 2001. Even though they are home, she still
has the Illiz. device on. Anyway McKenna is scheduled to have the device
removed in either late Jun or early Jul depending on how the bone hardens...We
would love to talk to anyone who wants more info. on this process...Just
email us at Grimbold@aol.com, and we will share all we know to date....We
owe all of our success to this website and the people who visit here and
post their life stories for all of us to share... General rule of thumb...For
every Doctor visit, for any medical condition...Trust yourself, do research...get
second opinions, and trust in a higher power...Whatever that may be...We
have been blessed to get through this part, and we have met some wonderful
people online, in Baltimore, and around the world... We know that we are
stronger as a family, and together we can get through anything!!! Thanks
again!!! Good luck & God Bless!!! Chuck, Karla, Dylan & McKenna
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention!!!
Location: Maple Grove, MN. - USA
WebSite:
Web Info:
Contact: Grimbold@aol.com
Date: Wed, Jun 27, 2001 at 02:06:06 (EDT)
Comments: Greetings all!!!
|
Visitor: Julie Honeycutt
Reference: back again!
Location: Grand Rapids,MIch
WebSite:
Web Info:
Contact: jhoneycutt@mfbrc.com
Date: Wed, Jun 13, 2001 at 07:44:52 (PDT)
Comments: Hello, I am the same physical therapist on
here again. I have a new address though since my last entry. I am still
interested in any adults with PFFD who might want to share their stories
of their porcedures and what issues they may be facing, such as pain etc.
I am working with a woman in her thirties with PFFD who underwent a VanNess
Rotationplasty when she was 4 or 5. She is having some back and hip pain,
and is now pregnant. She is excited , but I am looking for some more information
or people who encountered similar sitations so I can help her the best I
can. After pregnancy pain may be an issue for her too. Please contact me
if you have nay ideas, suggestions, resources, stories, etc! jhoneycutt@mfbrc.com
|
Visitor: DENNIS REHBOCK
Reference: INVOLVED WITH PFFD PATIENT
Location: JOHANNESBURG - SOUTH AFRICA
WebSite:
Web Info:
Contact: drehbock@surfnet.co.za
Date: Sun, Jun 10, 2001 at 07:26:04 (PDT)
Comments: I an a podiatrist that is involved with the
treatment of a PFFD patient. If anyone has any experiences with shoe midsole
lifting / raising to help the PFFD patient walk better, please contact me
on my e mail address. I am presenting a case history at our local podiatry
congress and would like some help or experiences. MANY THANKS. DR
|
Visitor: DENNIS REHBOCK
Reference: INVOLVED WITH PFFD PATIENT
Location: JOHANNESBURG - SOUTH AFRICA
WebSite:
Web Info:
Contact: drehbock@surfnet.co.za
Date: Sun, Jun 10, 2001 at 07:25:57 (PDT)
Comments: I an a podiatrist that is involved with the
treatment of a PFFD patient. If anyone has any experiences with shoe midsole
lifting / raising to help the PFFD patient walk better, please contact me
on my e mail address. I am presenting a case history at our local podiatry
congress and would like some help or experiences. MANY THANKS. DR
|
Visitor: Scott and Stephanie Capone
Reference: 1999-Found site through search engine
Location: Bayport, Long Island, New York
WebSite:
Web Info:
Contact: sshc1@netzero.net
Date: Thurs, May 03, 2001 at 19:52:22 (PDT)
Comments: Hi Folks, My daughter Hailey was born on Jun
4, 1999. She has left PFFD (level 3a-Paley classification) Dr. Dror Paley,
who as far as we are concerned is an angel from God is Hailey's doctor and
will be doing her lengthening. Hailey's condition is severe. Dr. Paley will
be performing the first of 5 operations starting with a soft tissue release
and knee reconstruction with an external fixator Jul 18, 2001 at Sinai Hospital.
We plan on detailing the course of events with PFFDvsg. My wife and I have
also registered the domain name www.pffd.org We have started an organization
dedicated to understanding of this condition as well as support and roads
to turn to including Dr. Paley. We are currently seeking funding. We will
be applying for several corporate grants as soon as the legal-non profit
end is taken care of. We hope to have the site launched soon. PFFDvsg has
helped us tremendously. We have spoken with many parents whose children have
PFFD because of this site. We hope to partner with PFFDvsg. Our prayers are
with all of you and we hope to hear your feedback.
|
Visitor: Shannon
Reference: From my Dr.
Location: Kentucky
WebSite:
Web Info:
Contact: Silkbrownsugar@hotmail.com
Date: Mon, Apr 30, 2001 at 13:48:06 (PDT)
Comments: I thank the Lord for sending me this wed site.
I was looking for something or someone's story that I can relate to. Well
I have found it now. God Bless, Shannon
|
Visitor: JASON SMALLWOOD
Reference: ASKED JEEVES
Location: SWINTON SOUTH YORKSHIRE U.K.
WebSite:
Web Info:
Contact: NONE 29 CORONATION RD SWINTON S.YORKSHIRE S64 /8AL UNITED KINGDOM.
Date: Thurs, Apr 26, 2001 at 06:49:09 (PDT)
Comments: OUR DALE STARTED FULL TIME SCHOOL ON MONDAY
23/04/2001. THEIR IS NO STOPPING THIS BOY HE LOVES IT. LIMB RECONSTRUCTION
DUE THIS YEAR /LENGTHENING RIGHT PROXIMAL FEMOUR DISCREPANCY NOW APPROX 6CM.
I CAN NOT BELEIVE HOW FAST HE HAS GROWN UP AND HOW FAST THIS OPPERATION IS
COMING. MYSELF,LISA DALES MUM,AND DALE WOULD LOVE TO HEAR FROM ANY FAMILIES
LIKE OURS. KEEP SMILING I KNOW HOW YOU FEEL. BYE...
|
Visitor: JASON SMALLWOOD
Reference: ASKED JEEVES
Location: SWINTON SOUTH YORKSHIRE U.K.
WebSite:
Web Info:
Contact: NONE
Date: Thurs, Apr 26, 2001 at 06:45:12 (PDT)
Comments: OUR DALE STARTED FULL TIME SCHOOL ON MONDAY
23/04/2001. THEIR IS NO STOPPING THIS BOY HE LOVES IT. LIMB RECONSTRUCTION
DUE THIS YEAR /LENGTHENING RIGHT PROXIMAL FEMOUR DISCREPANCY NOW APPROX 6CM.
I CAN NOT BELEIVE HOW FAST HE HAS GROWN UP AND HOW FAST THIS OPPERATION IS
COMING. MYSELF,LISA DALES MUM,AND DALE WOULD LOVE TO HEAR FROM ANY FAMILIES
LIKE OURS. KEEP SMILING I KNOW HOW YOU FEEL. BYE...
|
Visitor: JASON SMALLWOOD
Reference: ASKED JEEVES
Location: SWINTON UNITED KINGDOM
WebSite:
Web Info:
Contact: NO ADDRESS/ U.K. O1709 589919 TELEPHONE
Date: Thurs, Apr 26, 2001 at 06:19:34 (PDT)
Comments: MY SON DALE OWEN SMALLWOOD AGED FIVE WAS BORN
WITH P.F.F.D
|
Visitor: JASON SMALLWOOD
Reference: ASKED JEEVES
Location: SWINTON UNITED KINGDOM
WebSite:
Web Info:
Contact:
Date: Thurs, Apr 26, 2001 at 06:15:08 (PDT)
Comments: No comment at this time.....
|
Visitor: JASON SMALLWOOD
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Thurs, Apr 26, 2001 at 06:13:23 (PDT)
Comments: No comment at this time.....
|
Visitor: Louise Ford
Reference: steps website
Location: Carlisle England
WebSite:
Web Info:
Contact: fordlouise5@aol.com
Date: Fri, Apr 13, 2001 at 08:22:36 (PDT)
Comments: hi my daughter charlotte was born with pffd
she is four and half and her leg is about 12cms short.Last year she had a
hip operation which went well and the next step is lengthening.Has anyone
had their leg lengthened using the Albizzia nail?Yvonne Tobin from Airdrie
i,d be interested to hear from you as you dont live far away from me.
|
Visitor: YVONNE TOBIN
Reference:
Location: AIRDRIE, SCOTLAND
WebSite:
Web Info:
Contact:
Date: Thurs, Apr 12, 2001 at 04:18:38 (PDT)
Comments: LOOKING FOR INFORMATION ON VAN NES ROTATIONPLASTY.
STILL TRYING TO MAKE A DECISION. AMPUTATION OR VAN NES???
|
Visitor: Mike Starbuck
Reference: Dr. Paley
Location: Vermont
WebSite:
Web Info:
Contact: mstarb8172@aol.com
Date: Tuesday, Apr 03, 2001 at 13:07:10 (PDT)
Comments: My son, age 9 will going through a lengthening
procedure this summer. Looking for help/ideas/patterns with clothing
modification. He has a right short femor.
|
Visitor: Frank Haines
Reference: search
Location: Virginia
WebSite:
Web Info:
Contact: Idoitmyself@msn.com
Date: Tuesday, Mar 20, 2001 at 16:03:23 (PST)
Comments: My son,Gavin was born with PFFD on 10/29/97.My
wife and I are always looking for others to talk to, and get advice.
|
Visitor: Liam's Dad
Reference: Been here before...
Location: Canada
WebSite:
Web Info:
Contact: todd_hickey@stratos.ca
Date: Thurs, Mar 15, 2001 at 20:19:04 (PST)
Comments: Hello all. Just dropping in on the vsg after
being disconnected for some time. We are back on the east coast of Canada
once again. Liam was born 3/25/1998 with unilateral PFFD (Aitken class B)
rt leg. Liam will be 3 yrs old next week and what a little boy we have! He's
an inspiration to me every day, and certainly to everyone who knows him (he's
quite the popular little boy at daycare!). Liam has been using his platform
prosthesis (he calls it his 'buddy')and walking independently since 16 months.
He runs, skips, falls, runs skips, falls...yunno typical 3 yr old playing
hard. Absolutely nothing stops him, and I know we certainly will not either.
The latest 'plan' we've been given from specialists has been to look at surgery
for Liam around age 5. We've been considering Van Ness rotationplasty as
the best option, but of course that 'decision we have to make later' is coming
at us very rapidly it seems. I am very interested in hearing from parents/kids
who have gone through the Van Ness. Although Van Ness has been our preferred
approach for Liam, I really have to be convinced it will make life better
for him. He is extremely mobile and independent now with his straight-leg
platform prosthesis; I do not want to risk him losing that mobility and freedom
for very long. Does Dr. Paley perform Van Ness if lengthening is not an option?
I'm sure all of us on this group can relate to what this 'life-long' decision
means for our kids and that it's quite a gut-wrenching experience. Needless
to say, I am not at all looking forward to my little boy going through any
pain, especially pain that Daddy can't make go away. Looking forward to hearing
from you. God Bless!
|
Visitor: Paul Kainen
Reference: web search
Location: Washington, DC
WebSite:
Web Info:
Contact: kainen@georgetown.edu
Date: Sun, Mar 11, 2001 at 16:58:39 (PST)
Comments: I am a friend of the mother of a little girl
with PFFD. I am currently putting together pointers to electromagnetic therapy
in connection with TENS (transcutaneous electronic neural stimulation) which
aims to alleviate pain by sending weak currents through the skin. Some variants
use magnetism and I am preparing a comparison of the methods. Similarly,
there are a variety of electromagnetic approaches to bone healing - some
which claim to stimulate growth. These EM methods have not been shown to
be effective for PFFD, but perhaps with further scientific research (which
I am hoping to encourage), we may find that so-called ``energy medicine''
approaches will be helpful in minimizing the need for surgical intervention
for PFFD. As I accumulate the information, it may be found at the following
URL: http://www.georgetown.edu/faculty/kainen/PFFD.html
|
Visitor: gabriel reznik
Reference:
Location: argentina
WebSite:
Web Info:
Contact: greznik@irsa.com.ar
Date: Wed, Feb 21, 2001 at 12:30:23 (PST)
Comments: No comment at this time.....
|
Visitor: Laura Johnson
Reference:
Location: Madison, South Dakota
WebSite:
Web Info:
Contact: johnson5@hcpd.com
Date: Tuesday, Feb 20, 2001 at 10:33:29 (PST)
Comments: Just checking in. Our 2 and 1/2 year old daughter,
Hailey, just had another appt with Dr. Dahl at Gilette Childrens Hospital
in St. Paul last week. We are planing for her first lengthening sometime
next year. We really like Dr. Dahl and more important, Hailey seems to like
him. We really appreciate the fact that he sits down and REALLY talks to
us about it all and isn't afraid to tell it like it is. We feel very fortunate
to have found him. Until next time....Rich, Laura, Hailey and Kassidy Johnson
|
Visitor: Sotiris Giannas
Reference: Through Internet
Location: Greece
WebSite:
Web Info:
Contact: sotiris_giannas@yahoo.com
Date: Mon, Feb 19, 2001 at 21:28:14 (PST)
Comments: I have a daughter two years old,who was born
on Jan 18,1999 with PFFD at her right leg.On Feb 6, 2001 she had her first
surgery (at her hip, femur and Knee) at Kernan Hospital .She has been operated
by Dr. Paley.I would be delighted if I could help anyone who faces the same
kind of problem.
|
Visitor: Lu Worman
Reference: internet search
Location: California
WebSite:
Web Info:
Contact: worman@dreamsoft.com
Date: Sat, Feb 10, 2001 at 21:32:11 (PST)
Comments: Hello everybody! I am a gransmother of a 3
month old granddaughter Kasity. Kasity was diagnosed with PFFD the minute
she was born and we are at our first step to a long road of dealing with
that. My little girl does not have a hip joint at all and her fimor is about
1/2 length of normal. Ironically, 8 years ago my daughter Mariya, mother
of Kasity and I moved to The USA from Russia , the homeland of Ilizarov.
I am very happy I found this support group. Thanks to everybody who makes
it possible. I am sure my daughter and I are going to be here with all of
you for a long, long time. Our best wishes to you all.
|
Visitor: julie Honeycutt
Reference: browsing
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: jhoneycutt4@juno.com
Date: Wed, Jan 31, 2001 at 12:40:59 (PST)
Comments: It is nice to see more comments re: folks who
have gone different routes for treatment of PFFD, and citing the psychological
hurdles that may occur. I am a physical therapist who works with children
and some adults with PFFD. Any adults out there with PFFD , either with
lengthenings, ablation surgery, or VanNess rotationplasty, that can share
some insights into how you manage pain issues, stretching, activities and
sports as you get older and any changes you have notices? Thanks!!!
|
Visitor: Linda
Reference:
Location: Canada
WebSite:
Web Info:
Contact:
Date: Tuesday, Jan 30, 2001 at 19:10:09 (PST)
Comments: I have just enjoyed reviewing all the material
on your website. You have parents who wish there was more info available.
Our daughter was diagnosed in 1977 and there was NOTHING available. However,
we did search out the specialists and she has had many surgical procedures
including, at age 12, a lengthening with the Ilizarov technique. The result
is a deficit of almost 3 inches but the hip continues to present problems.
I am mainly writing to caution parents that this is a life-long problem and
that your child will need your support and advocacy for many years to come.
It is a tremendous challenge as each of you knows and an ongoing one as the
needs of your son or daughter change. The psychosocial aspect seems to be
downplayed in the articles by Dr. Paley but having been through the teen
years with our daughter, the impact on the child's self-esteem and body concept
re-surfaces in the late teen years. I would describe it as a time when the
child begins to take responsibility for his/her own problems and for the
person with PFFD, this adds a considerable challenge. You are doing a great
service. Good luck to all. Linda (Ontario, Canada)
|
Visitor: Karla Berg
Reference: Divine Intervention
Location: Maple Grove, Minnesota
WebSite:
Web Info:
Contact: Grimbold@aol.com
Date: Fri, Jan 19, 2001 at 17:55:59 (PST)
Comments: Okay, we no longer lay claim to the Minnesota
Vikings! Well, we have now been in Baltimore for 2 weeks. McKenna's surgery
on Jan 10th went very well(it took approximately 3 1/2 hours for Dr. Paley
to get the Illizarov on). The first day was rough, as expected. She wanted
us to take it off, even though we had tried to prepare her as much as possible
beforehand. Now, a week and a half later, she has named it Scooby Doo, is
able to do some walking, and loves the swimming part of the physical therapy!
However, she already has a pin infection... but I guess we expected that.
We have now just begun the actual lengthening process, so we are anxious
to get things going...Well, if you have any questions, please feel free to
e-mail us any time. We'll keep you updated as things progress. Thanks again
to all of you who have shared your thoughts and experiences. It has gotten
us where we are today! Chuck, Karla, Dylan and McKenna
|
Visitor: Karla Berg
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Fri, Jan 19, 2001 at 17:44:45 (PST)
Comments: No comment at this time.....
|
Visitor: Charles Berg
Reference: Divine Intervention
Location: Maple Grove, MN-USA
WebSite:
Web Info:
Contact: Grimbold@aol.com
Date: Sun, Jan 07, 2001 at 15:53:30 (PST)
Comments: Greetings from Minnesota!!!!!! Well, we are
finally going in for the lengthening on 01-10-01 with Dr. Paley. We arrived
on 01-06-01, and have moved into our leased apartment. The company that arranged
for this furnished apartment has done an excellent job!!! Email us for more
info.. Anyway, we are getting ready for surgery, and are kinda nervous. Karla
and McKenna will be out here(Baltimore,MD) for around 4 months with Dylan
and I flying in every other weekend or so...Drop Karla a line at Grimbold@aol.com
when ever you can as she could use the encouragement!!!!! We want to thank
all of you for the support and prayers so far, and we will keep you posted
as things progress!!! Oh yea, one more thing....GO VIKINGS!!! Sorry, had
to do that....Good luck, and God Bless!!! Chuck, Karla, Dylan & McKenna
|
Visitor: Mike Malloy
Reference:
Location:
WebSite:
Web Info:
Contact: pffdvsg@ohio.net
Date: Thurs, Jan 04, 2001 at 19:53:41 (PST)
Comments: Welcome to the 2001 PFFDvsg Guestbook. Thanks
for stopping by. Please take a few moments to sign our guestbook. Past experience
shows that many future PFFD parents will find these comments very helpful.
Guestbook archives for 1997-2000 are available on our website at
www.ohio.net/~pffdvsg. Thanks for signing.........Mike
|
Visitor: Rebecca Neal
Reference:
Location: Canada
WebSite:
Web Info:
Contact: Smokey.thebear@sympatico.ca
Date: Wed, Dec 13, 2000 at 10:25:12 (PST)
Comments: I wish there was more sites for support groups.
This is great!!!!
|
Visitor: Tracy Davis
Reference: doing research
Location:
WebSite:
Web Info:
Contact: davist@blue-ridge.navy.mil
Date: Sun, Nov 26, 2000 at 10:10:20 (PST)
Comments: Hello, I have been looking at this site for
a few weeks now. I'm note sure what I want to say. On Jul 24 1996 my daughter
Almedia was born. I had a C sections because she was breach and did not know
right away that there was a problem. It was about 45 min later when the nurse
brought my angel to me all wrapped in a blanket and said Now MRS. Davis there
are a few problems and I need to tell you about...... She was born with PFFD
of the right leg and complex syndactyly of both hands with no little fingers.
By the time she was 3yrs old she had been through 4 surgeries. 3 on her hands
to release the syndactyly and an osteotomy on her leg to take some of the
bow out of her femur. Since I have found the site I have learned that we
are lucky. She has a hip that is in the socket and a stable knee and foot
so amuptation was never a thought. I can not imagien having to make that
decision. She has about a 3 inch differance right now. The doctor says it
could end up between 4 and 6 inches by the time she is done growing. He has
talked about stapling the left leg to stunt the growth at around 9 yrs of
age and doing a lengthening later on. I have read most of the stories in
tears learning what my baby still has to go through in the future. I know
it will be the right thing to do, but to see my child in pain will rip my
heart out. I also know that god does not provide one with something they
can not handel so we will get through this. I am unsure if waiting to do
the lengthening later is the best thing to do. I am pleased to find other
families that have similar conditions. Until I found this site I had only
heard about others but I have never had a chance to talk to anyone. Allie
was in a spica cast for 12 wks. We learned a lot about taking care of her
and the cast if anyone needs this information. I would like to talk to anyone
about my daughters condition. My e-mail is davist@blue-ridge.navy.mil. I
am active duty military and would like to know if there are many military
members that have PFFD children. Thanks for listening and taking the time
to read. I am greatful to the familes that have provided information and
it has helped a lot.
|
Visitor: Gigi Mourad
Reference: I got here through searching for info about pffd
Location: New Jersey
WebSite:
Web Info:
Contact: gelsamra@cs.com
Date: Mon, Nov 20, 2000 at 18:02:07 (PST)
Comments: My son is five months old. He has unilateral
PFFD. He is estimated to have 15cm deficiency at maturity. I have been reading
all the stories on the vitual support group and it helped me greatly in
understanding my son's condition. It also gave me strength in dealing with
such a rare birth defect.
|
Visitor: Joann Bilek
Reference:
Location: Battle Creek, Michigan
WebSite:
Web Info:
Contact: joann_bilek@spartanstores.com
Date: Fri, Nov 10, 2000 at 16:23:44 (PST)
Comments: Just an update on Jamie. I've been working
on updating Jamie's Page. I'm near done. Wanted to let everyone know that
Jamie is scheduled for another surgery on Jun 12, 2001. Dr. Lubicky has decided
to try a different route to her rotation since the original Van Nes procedure
has started to derotate. They will be breaking her tibia midway and rotating
her leg from there. During this procedure they will evaluate the condition
of her ankle and may proceed with the ankle fusion at that time. She is really
doing well, but the derotation is very noticable, especially to her prosthetisist
who has to adjust the direction of her prosthesis at every check up. Dr Lubicky
was concerned that her Van Nes could do this due to the fact that she is
missing her hip joint. He hopes that in breaking the leg further from the
hip joint, derotation will not be a factor. I will keep you all posted and
I promise to have Jamie's updated page to Mike after the first of the year
if not sooner. Keep in touch everybody. Aunt Jo
|
Visitor: Cindy and Dave Kenyon
Reference:
Location: Toledo, Ohio
WebSite:
Web Info:
Contact: r121898@aol.com
Date: Thurs, Nov 02, 2000 at 16:36:04 (PST)
Comments: Our son is now going on 23 months old. When
I was 7 months pregnant, we found out he was going to be born with a short
femur and no fibula. We researched and talked to all different people trying
to get all the information we could so we could make the right decision for
our son. This web site was our lifesaver. It helped us in our darkest hours,
as we read all the different stories and what others were going through or
had went through with their child. On Nov 10, 1999(almost a year ago), our
son had the Symes amputation done. They took off his left foot. He was in
a cast for about 4-5 weeks. He was fitted for a prosthesis and started wearing
it in Jan. He started walking in about 2-3 weeks. He is now a very busy and
energetic little boy. He lets nothing stop him. If he sees something he wants
to do, he gives it his best shot. He climbs up on everything and acts just
like any 'normal' 23 month old. We are looking at a second surgery maybe
in Jun or Jul to fuse the knee. If our story helps anyone or we can answer
any questions, please feel free to e-mail us at r121898@aol.com.
|
Visitor: Cindy Kenyon
Reference:
Location: Toledo, Ohio
WebSite:
Web Info:
Contact: R121898@aol.com
Date: Thurs, Nov 02, 2000 at 16:11:02 (PST)
Comments: No comment at this time.....
|
Visitor: Misti Blue
Reference: told about by therapist
Location: El Paso, Texas
WebSite:
Web Info:
Contact: lex@whc.net
Date: Fri, Oct 13, 2000 at 12:10:40 (PDT)
Comments: No comment at this time.....
|
Visitor: Derrick Norris
Reference: I was researching for a informative speach.
Location: Michigan
WebSite:
Web Info:
Contact: dmnorris2@juno.com
Date: Mon, Oct 09, 2000 at 19:23:22 (PDT)
Comments: I am 22 years old. I have PFFD, and my parents
chose to have my right foot amputated at the age of 2. My right leg is over
a foot shorter than my left. The main reason that amputation was chosen,
was for cosmetic purposes. I want to send a few words of encouragement to
worried parents. I have lived a normal life. I can truly say that every thing
has been harder on my parents than on me. I play basket-ball, skateboard,
ice skate, and was even on the rowing team in my highschool. My parents are
the best, they have never discouraged me, if I wanted to go out and climb
a tree, my parents would just stand there nervously watching. Ihave fun with
my prostetic leg, and even paint it up with fake tatoos. Right now I have
flames covering the bottom. What ever your choice for your children is, stand
by them and support them in all they do. Never tell them that they can't
or that they shouldn't attempt something. I may have had my fare share of
scratches and bruises, but they are all worth it. Friends are amazed because
I can run faster than some of them, and jump higher than all of them. Never
forget to tell your child how very special he/she is. Because they are special,
and may one day be able to help out another child with PFFD. Thanks.
|
Visitor: Gerald Eyers
Reference: Yahoo!
Location: Wells, ENGLAND
WebSite:
Web Info:
Contact: geyers@btinternet.com.uk
Date: Sun, Sep 10, 2000 at 05:45:17 (EDT)
Comments: Thanks, lots to read.
|
Visitor: Brian Day
Reference:
Location: Raleigh, NC
WebSite:
Web Info:
Contact: Brian.day@pobox.com
Date: Mon, Sep 04, 2000 at 13:45:56 (EDT)
Comments: My last posting was in Mar of last year (1999)
just before Erin (our 4 year old daughter) had her left leg (her better leg,
both have PFFD) fixed by Dr. Dror Paley. A 9 hour surgery with 3 major procedures
(hip, femur & knee) resulted in a wonderfully functional and strong leg!
For the past year Erin walked with a lift on her right leg. Earlier this
year, we were about to give the 'OK' to the rotation plasty to use her ankle
as a 'knee' for moving a prosthesis. However at that time, we were fortunate
to meet Arnaud Soubeirin from France who has been producing internal prostheses
for children who had bones removed due to cancer. He has >10 years of
experience with these devices and has a very high success rate. These internal
prostheses expand as the child grows via an external inductive coil which
causes an internal plastic piece to temporarily melt and allow an internal
spring to extend. Erin has had a fixator on for over two months now and has
extended (distracted) her right leg about two inches with about four inches
to go. After distraction is complete, she will be measured for the 'femur'
which will include an artifical knee and hip. Depending on how much extension
she getst now, she will have to have another internal prosthesis installed
once or twice before becoming an adult and having a solid one installed.
Erin was selected for this because Arnaud is just now venturing beyond cancer
victims and because her 'good' leg has a short femur, so not so much distance
to make up compared to someone with a perfect other leg. I'll keep you posted.
(Pun intended!)
|
Visitor: Rick Rhoton
Reference: been here before but its been a while
Location: Bullhead City,AZ
WebSite:
Web Info:
Contact: reslrranch@hotmail.com
Date: Wed, Aug 16, 2000 at 07:33:27 (EDT)
Comments: My gosh a whole lot has happened in the last
few months since I have left a message and see that quite a few people have
signed in and have left messages, I am hoping that one of you have had the
Van Ness and can give us some insight and maybe a picture of your childs
leg before and after, we have only been able to find drawn pictures on the
internet and they just don't give anything justice. We would like this so
we can make the most educated decision possible. I know that I have recieved
many e-mails from alot of you and have also even recieved a video, which
helped alot but now we are trying to decide on the best route for Sam. Van
Ness vs lenghtening, they both have there pros and cons. Thanks for any help
anyone might be able to give us.
|
Visitor: Jason
Reference:
Location: More about my girlfriend Shannon
WebSite:
Web Info:
Contact:
Date: Mon, Aug 14, 2000 at 13:47:35 (EDT)
Comments: Only 4 more days Shannon and I leave for college,
we are both very exited about school and also that we can be together. Shannon
has got use to wearing her brace, she is using the knee lock pretty much
all the time now, she says for the first time in her life she is able to
walk without being afraid of falling. Her doc told her not to worry to much
about damage from walking with her leg always straight but if she starts
to have any pain in her hip or back to let him know, so far at least no problem.
I am so proud of Shannon, she is so strong and confident, I know we are both
still very young but I hope and pray we can stay together always.
|
Visitor: Helen Nash
Reference: by the longest route possible
Location: Bowmanville Ontario Canada
WebSite:
Web Info:
Contact: emilyn@look.ca
Date: Sat, Jul 29, 2000 at 11:36:28 (EDT)
Comments: I am now 38 years old. In the last 4 years
my hip, knee and spine are degenerating at an alarming rate. I have bilateral
pffd with varus and vulgus of the lower extremities. My right side is affected
to the point where I use a prosthesis;and because of this, ironically it
is so severe that there is very little pain. My left side is another story
altogether. My first operations were at 3 weeks of age, performed at the
Hospital for Sick Children in Toronto, Canada. 15 orthpaedic surgeries later,
they now tell me there is nothing more they can do for the pain, except increase
my narcotic and muscle-relaxant medication. Where I once lived independently
in Vancouver as a Music Therapist in Palliative Care, I now live at home
with my parents and find it difficult to get out of bed every day. Is ther
ANYONE out there experiencing anything similar to my situation. Living with
constant and extreme pain, and having to give up my vocation, friends and
independence has been a very difficult situation to adapt to. I would very
much like to hear from anyone because in all the years I've been around hospitals
and clinics, I have only seen 2 younger children with conditions similar
to mine. I have never spoken to anyone with pffd yet would very much like
to reach out and be a part of this viritual support group. Thankyou most
sincerely, Helen Nash
|
Visitor: Linda
Reference:
Location: Huntington Beach, CA
WebSite:
Web Info:
Contact: rsedivy@aol.com
Date: Mon, Jul 17, 2000 at 23:15:30 (EDT)
Comments: My daughter Shauna who is 12, went through
a lengthening last year. Now she wears a lift on her shoe of only 1 1/2 inches.
Her doctor wants to put staples in her good leg growth plate at the knee.
It makes sense because she does not want another lengthening. I'm still unsure
if this is the right thing to do. Has anybody had this done? Thanks for any
response.
|
Visitor: Tracey Robbins
Reference: My closest friend is Cherie
Location: Edmonton, Alberta
WebSite:
Web Info:
Contact:
Date: Mon, Jul 17, 2000 at 14:23:53 (EDT)
Comments: I would like to say that Cherie is probably
one of the most strongest, brightest people I know. She doesn't stop at anything.
She is absolutely amazing. She is a very successful young woman who has
accomplishment so much so far in her life. I commend you Cherie.
|
Visitor: Tracey Robbins
Reference: My closest friend is Cherie
Location: Edmonton, Alberta
WebSite:
Web Info:
Contact:
Date: Mon, Jul 17, 2000 at 14:23:14 (EDT)
Comments: I would like to say that Cherie is probably
one of the most strongest, brightest people I know. She doesn't stop at anything.
She is absolutely amazing. She is a very successful young woman who has she
has accomplishment so much so far in her life. I commend you Cherie.
|
Visitor: Tracey Robbins
Reference: My closest friend is Cherie
Location: Edmonton, Alberta
WebSite:
Web Info:
Contact:
Date: Mon, Jul 17, 2000 at 14:13:19 (EDT)
Comments: No comment at this time.....
|
Visitor: Kathy
Reference: Found you by going under medical dictionary
Location: Lincoln NE
WebSite:
Web Info:
Contact: kzimme2600@aol.com
Date: Sun, Jul 16, 2000 at 13:00:38 (EDT)
Comments: I am interested in learning about this my niece
who is 4 months old has pffd. I am trying to help out my sister and her husband
find out as much as possible to help them decide what treatment is best.
|
Visitor: Jason
Reference: update on girlfriend Shannon
Location:
WebSite:
Web Info:
Contact:
Date: Tuesday, Jul 11, 2000 at 12:59:43 (EDT)
Comments: Shannon got her brace last week which she is
still getting use to. It is suppose to keep her leg in alinement and prevent
from over-extending her knee, also there is a knee lock she can use when
she is tired or has to stand for a long period. She is finding she has to
use the lock way more than she thought, without the ability to over-extend
her knee she feels very unsteady alot of the time. I understand how
over-extending will cause long term damage to Shannon's knee, but it seems
like walking with her knee locked will put stress on other areas and probably
cause damage. Does anybody have any experience with this? For those who havn't
read my earlier messages, Shannon has a short leg since birth, she had lengthing
surgery (horror story!) when she was 8 and currently (she's 18) wears a lift
on her shoe of about 3 inches.
|
Visitor: julie Honeycutt
Reference: bookmarked
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: jhoneycutt4@juno.com
Date: Fri, Jul 07, 2000 at 18:01:58 (EDT)
Comments: Hi, I am a PT who works with children and families
with PFFD. anyone have any comments re: the longterm followup of limblengthening
in PFFD? Like 10 years post lengthening? Any complications? Sports involvement?
Recurrent dislocations or surgeries?
|
Visitor: Crystal
Reference: Search
Location: Renton, Washington
WebSite:
Web Info:
Contact: ckappenman@uswest.net
Date: Wed, Jul 05, 2000 at 04:18:17 (EDT)
Comments: I have a 16 month old daughter (D.O.B. 2/22/99)
who has a short right femur. She is a candidate for bone lengthening when
she is 5 or 6 at Children's Hospital in Seattle, Washington. I would love
to hear from anyone who has experienced bone lengthening at this hospital.
I have been on the site before but never noticed the guestbook. It is a wonderful
source of info and support. Thanks.
|
Visitor: LIMEXANT DASIE
Reference: NEWBORN
Location: USA
WebSite:
Web Info:
Contact: FRITZYCO@NETZERO.NET
Date: Mon, Jun 26, 2000 at 02:48:12 (EDT)
Comments: No comment at this time.....
|
Visitor: Barbara Doughty
Reference: search
Location:
WebSite:
Web Info:
Contact: badoughty@accnorwalk.com
Date: Thurs, Jun 22, 2000 at 20:25:57 (EDT)
Comments: It's been a long time since I posted. I have
a niece, Sarah, who will be 2 years old in Jul who has bilateral PFFD. She
has had her clubbed feet surgically repaired and is doing very well. She
stands and crawls on hands and feet. She doesn't walk yet but is getting
closer. Here is a little website that shows a few pictures of her.
http://www.zyworld.com/mapletree/Home.htm Barb Sarah's aunt
|
Visitor: Robyn
Reference:
Location: New Jersey
WebSite:
Web Info:
Contact: Robyn72@aol.com
Date: Thurs, Jun 08, 2000 at 19:27:21 (EDT)
Comments: Just wanted to say hi. Allison is now 7 months
old. We go back to Philly in Sep for a follow up and I am guessing she will
be fitted for her shoe. We took her for an ultra sound on her hip, thankfully
it looks good. I have to laugh because one doctor told us how far behind
in sitting up and crawling she would be. Well not my kid. I have to keep
all eyes on her. She darts across the room and pulls herself up on EVERYTHING.
As far as sittingup she mastered that about 2 1/2 months ago. She can walk
bit if we hold her hands. I get such a kick seeing her scoot around. Funny
how this time last year I was such a nervous wreck thinking about this PFFD,
now, my biggest concern is making sure she can't pull a bookshelf on her.
I will write more as time goes on. Till then everyone take care. Robyn
|
Visitor: Julie Honeycutt
Reference: keep checking
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: jhoneycutt4@juno.com
Date: Wed, Jun 07, 2000 at 17:36:08 (EDT)
Comments: I am the frustrated Physical therapist in Michigan
who is trying to get more info and references for parents who do not have
access to the internet. Now there seems to be a confusion out there re: real
PFFD DX and congential short femur, especially in looking at lengthening
options. Lengthening is more of an option when the hip is developing near
normal. This is confusing also in the literature!
|
Visitor: Shauna Sedivy
Reference: my mom found it.
Location: California
WebSite:
Web Info:
Contact: splitgrl00@aol.com
Date: Sat, May 27, 2000 at 23:31:20 (EDT)
Comments: Hi, my name is shauna( age 12 ) and I went
through a leg lengtining last year. I visited the doctor yesterday and she
says I'm going to stop the growth in my right leg. I'm a little nervase,
but she says it will make my legs about evan. I'm looking for advice for
those of you who have gotten the growth stopped in your leg. Feel free to
e-mail me at: splitgrl00@aol.com. Thanks, Shauna
|
Visitor: Jason
Reference:
Location: update on Shannon
WebSite:
Web Info:
Contact:
Date: Wed, May 24, 2000 at 11:01:06 (EDT)
Comments: My girlfriend Shannon told her parents and
doctor there was absolutely NO WAY she would put off college and NO WAY she
would go through another lengthing. Doctor reassured her parents this is
not the last chance, they could still do it later on, and this calmed them
down now they are willing to except the fact that Shannon would rather live
with her leg the way it is. I am very proud of the way Shannon stood up for
what she wanted, we will be graduating in 3 weeks and then to college in
the fall. We are going to the same school so we will still be together!!
With all the extra walking on campus, Shannon's doctor strongly recommended
a brace to aline her leg and keep from over-extending her knee, which she
will be getting this summer.
|
Visitor: Linda Woolwine
Reference:
Location: Oklahoma City, Oklahoma
WebSite:
Web Info:
Contact: Linda-Woolwine@ouhsc.edu
Date: Mon, May 22, 2000 at 16:28:41 (EDT)
Comments: My daughter is a beautiful, 20 year old Sophomore
in college. She was born with Type IV PFFD, right leg. In 1980 very little
information was available. My daughter had Syme amputation and hip surgery
at 20 months. She made a successful recovery, was walking again at 23 months
and over the years participated in softball, basketball, volleyball and for
four years participated in gymnastics, was a member of the team and competed
in district meets. In high school she applied and was accepted to an
International Baccalaureate program, held school offices, attended the prom
3 years in a row, graduated with honors and then on to college where she
is a Presidential Scholar and carries a 4.1 GPA. The point of this brag-fest?
These children can do anything!!
|
Visitor: Jason
Reference: Girlfriend Shannon
Location:
WebSite:
Web Info:
Contact:
Date: Thurs, May 11, 2000 at 20:39:14 (EDT)
Comments: My girlfriend has a short leg due to a birth
defect. When Shannon was 8 (she is 18 now) she went through a leg lengthing.
She says she will never forget the pain, now she may have to goi through
it again. Her parents and doctors want to lengthen her leg 3 inches that
would make her legs nearly even. Shannon would rather leave it alone, she
wears a shoe lift and most of the time can walk with only a small limp. But
when she is tired or walks alot, she has pain in her leg, the limp gets worse
and she has to push back on her leg with her hand to keep her knee from giving
out. Her doctor says this is because her leg is out of alinement and this
would be fixed along with the lengthing. Without the lengthing Shannon will
need to start wearing a brace. What should she do?
|
Visitor: FRANK GRATKE
Reference:
Location: WISCONSIN
WebSite:
Web Info:
Contact: GRATKE.EXECPC.COM
Date: Wed, May 10, 2000 at 16:12:12 (EDT)
Comments: SON BORN 5-5-92 PFFD AIKEN CLASS D RIGHT LEG
QUESTION: IS SWIMMING GOING TO HELP IF SURGERY IS PLANNED? HOME PHONE
414-762-3424
|
Visitor: Lydia Brew
Reference: searching for PFFD
Location: the Netherlands
WebSite:
Web Info:
Contact: dbrew@packardbell.org
Date: Sat, Apr 29, 2000 at 09:44:34 (EDT)
Comments: Our daughter Esther is born (feb.18 1998) with
PFFD.In Holland is not so much information about PFFD , so we are happy we
have found some on internet !
|
Visitor: Kathy Bell
Reference: searching internet
Location: Kinston, North Carolina
WebSite:
Web Info:
Contact: babysprout@yahoo.com
Date: Sat, Apr 15, 2000 at 14:32:09 (EDT)
Comments: I have a three-year old with ppfd. She is getting
to have a hip fusion. Any suggetions to help her get through hard times she
will experience in life?
|
Visitor: Cindy Gustavson
Reference:
Location:
WebSite:
Web Info:
Contact: cgustavson@mindspring.com
Date: Sat, Apr 01, 2000 at 19:25:03 (EST)
Comments: I have an eight year old son with PFFD. He
is very active. He is really into swimming and riding his bike. He still
has his natural leg & foot,and is fitted with a prosthesis.We go to Shriners
hosp.In greenville S.C. I am very happy to have found this site. When he
was born in 1992,No one seemed to really know alot about it. And until I
went to Shriners I had never saw another child with PFFD. And had never talked
with another parent.
|
Visitor: Cindy Gustavson
Reference: my sister found this site.
Location: Weaverville, N.C.
WebSite:
Web Info:
Contact: cgustavson@mindspring.com
Date: Sat, Apr 01, 2000 at 18:48:20 (EST)
Comments: I have an eight year old son with PFFD. We
have not amputated.
|
Visitor: Nancy Lewis
Reference: SuperKids website
Location: Jacksonville, IL
WebSite:
Web Info:
Contact: njm@csj.net
Date: Wed, Mar 29, 2000 at 19:30:25 (EST)
Comments: My son is 10 and has PFFD, affecting his right
leg. He had an adjacent, although useless, foot with 4 toes amputated at
9 months and is a total live wire in sports and in life. We have met one
other person, a young man, with PFFD and were so intrigued that he even had
a similar 'dimpled' ridge on the lower part of his leg.
|
Visitor: Ginette McKenzie
Reference:
Location:
WebSite:
Web Info:
Contact: Teppu@tmarlow.swinternet.co.uk
Date: Sat, Mar 18, 2000 at 10:19:10 (EST)
Comments: I am trying to get in touch with people with
PFFD or parents of PFFD children , from Ireland.
|
Visitor: michelle maly
Reference: searching for pffd
Location: birmingham, alabama
WebSite:
Web Info:
Contact: vmmaly@mindspring.com
Date: Sun, Mar 12, 2000 at 21:04:43 (EST)
Comments: I have a 3 year old daughter with PFFD. When
she was born the doctors in Birmingham told us her foot would need to be
amputated at 9 months old. We decided to get a second option and went to
see Dr Morrissey in Atlanta. He told us that we did not have to make a decision
now that she just need to develop normally. As it turns out it looks like
she may need to keep her foot so that it will at length and stablity for
that leg. She is a joy and I could not imagine her any other way. Samantha
is also in a book called Just As I Am - Americains with Disabilities. The
stories in this book are very inspiring and gives you a new perspective on
what normal is.
|
Visitor: michelle maly
Reference: searching for pffd
Location: birmingham, alabama
WebSite:
Web Info:
Contact: vmmaly@mindspring.com
Date: Sun, Mar 12, 2000 at 20:55:34 (EST)
Comments: No comment at this time.....
|
Visitor: Kathleen McConnell
Reference:
Location: Quaker City ,Ohio
WebSite:
Web Info:
Contact: kmcconnell@1st.net.com
Date: Fri, Mar 03, 2000 at 09:51:52 (EST)
Comments: I have a 14 year son with PFFD. I have had
alot of rough times with seeing him go through surgery. But all in all, the
comical things have a tendancy to out weigh the bad. Have you ever come home
to find your child doing things that a person with two good legs should not
be doing?I came home one day to find my son on a ten-speed,with his crutches
on the handlebars, and wearing a rollerblade on his good leg. Talk about
a trick-rider? Evil Kinevil has nothing on this kid! If it weren't for his
sense of humor I could not have made it through. He has no quams about his
condition. He has one leg and who cares what other people have to say. He
has more fun than ten kids put together. We live in a very small community
in Ohio,things here have been the same for centuries,and then Joey showed
up.Now it is not uncommon to drive through town and find my son's leg propped
against the only stop sign in town. It gets in the way when he is riding
his bike,so he just drops it off until later.He is like no other child that
I know and I am glad. I can honestly say that he has definently made my life
much more interesting. God bless these children and their tougher-than-nails
parents!
|
Visitor: Yianna Paula
Reference:
Location: Greece
WebSite:
Web Info:
Contact: paula1@otenet.gr
Date: Thurs, Mar 02, 2000 at 17:07:33 (EST)
Comments: Hi, my name is Paula. Last year, in Jan, my
beautiful niece,Lydia, was born. At birth she was dignosed unilateral PFFD.
I must admit that it was a shock to all of us and at first it was very difficult
to get used to the idea that this precious angel had something that was totally
unknown to us. In the beginning we didn't know anything about this abnormality,
and to be honest it was through this page on the internet, which I found
completely by chance, that we managed to learn some things about it.I was
shocked to see all that pain and suffering that was coming out of these messages.
Now, a year later, the situation has improved. My precious little niece is
growing more and more beautiful and she is so stubborn that nothing seems
to stand in her way. I have faith that she will get over any obstacle, even
though there is a hard long road ahead of us. For the time being, we are
all anxious to see her walk. She will have to wear a special prosthesis,
until next year, when she will have her first operation by Dr.Paley, in
Baltimore.(if anyone has gone through a similar condition, I mean with the
special prosthesis, I would be grateful if you could contact me). The only
thing I can wish to anyone who has gone through this situation is to have
strength. I don't know if I would have been able even to pronounce these
words a year ago, but now, a year later, things seem so different, and even
though we know the difficulties, we all seem in a way determined to make
the best we can for our precious Lydia. Thank you for taking the time to
read this few lines....
|
Visitor: Julie Honeycutt
Reference: search
Location: Grand Rapids, Michigan
WebSite:
Web Info:
Contact: jhoneycutt4@juno.com
Date: Mon, Feb 28, 2000 at 15:53:58 (EST)
Comments: I am a pediatric physical therapist working
at the Center for Limb Differences in Grand Rapids, Michigan. I am always
looking for the latest info and support for all of our patients here with
PFFD. Mostly, lengthening vs. non-lengthening
|
Visitor: Ashley Wischnewsky
Reference: Ohio.net
Location: Texas
WebSite:
Web Info:
Contact: myangels@angelfire.com
Date: Sun, Feb 27, 2000 at 18:08:09 (EST)
Comments: I am new to the PFFD situation. My daughter
Gracie was born on Dec 6, 1999 and was diagnosed with PFFD. Because she is
so young we are not sure of the severity of her condition, we have to wait
for her bones to calcify some more before we can be sure of exactly what
we are dealing with. I have done alot of studing on the internet, but I would
like some first hand advise from other parents.
|
Visitor: leda .
Reference: by dissorder name
Location: michigan
WebSite:
Web Info:
Contact: L9100@aol.com
Date: Fri, Feb 18, 2000 at 20:23:44 (EST)
Comments: I have a 5wk old daughter diagnosed with this...i'd
like to know what i can do for her now and in the future. her femer seems
to be 2cm shorter than the other...that was at birth.
|
Visitor: Nanette Hendrickson
Reference: my daughter found it
Location: california
WebSite:
Web Info:
Contact: nannybc @aol
Date: Sat, Feb 12, 2000 at 12:22:13 (EST)
Comments: Hi, I'm the mom. My daughter has had two leg
lengthening surgeries to correct her PFFD, and has stapples in her other
leg to limit the growth. Now at 16, her legs are just about even. It's a
long hard road, but light is at the end of the tunnel! Samantha is a remarkable
person and enjoying teenage life to the fullest. I have nothing but thanks
and love for the doctor that made it possible. Dr. John King and L.A. Childrens
Hospital. He is a miracle worker. Any one that would like to talk via e-mail,
feel free to write.
|
Visitor: Robyn
Reference:
Location: New Jersey
WebSite:
Web Info:
Contact: Robyn722aol.com
Date: Tuesday, Feb 08, 2000 at 21:00:42 (EST)
Comments: Hi everyone. I have a four month old with PFFD.
My husband and I took her to CHOP in Philly, just for a consult. We are meeting
with a docotr at Schriners in Mar. Has anyone had experience with Schriners???
|
Visitor: Robyn
Reference:
Location: Riley
WebSite:
Web Info:
Contact: Robyn72@aol.com
Date: Sat, Jan 29, 2000 at 22:38:33 (EST)
Comments: Hi, I am on under my cousins name. We just
took Allison our 3 month old to Chop in Philly. We are going to meet with
Dr Davidson at Schriners(did I spell it right?) in Mar. We dont know the
full extent of her pffd, but any ifo would be greatly appreciated. Pffd was
found on my 18 week sono while I was pregnant.
|
Visitor: Mary Lou LaVallee
Reference: searched for pffd
Location: Saskatchewan Canada
WebSite:
Web Info:
Contact: lavallee_m_lou@hotmail.com
Date: Fri, Jan 28, 2000 at 12:02:44 (EST)
Comments: My daughter is 13 yrs old. We are searching
for other teens born with pffd in Saskatchewan (or anywhere in Canada)
|
Visitor: Gerri McCartney
Reference:
Location: Belfast
WebSite:
Web Info:
Contact: gerri@excite.co.uk
Date: Fri, Jan 28, 2000 at 07:32:32 (EST)
Comments: My baby sister was born with congenital pseudo
orthosis. She is now two years old and after numerous operations we have
discovered that they haven't been successful and if the next two operations
are failures she will loose her leg. Your page has given me an insight to
how others have coped. We are still hoping for a cure. Would love to hear
from anyine in same position.
|
Visitor: Tim & Lorrie Woitowich
Reference: searching for info on pffd
Location: Medicine Hat, Alberta Canada
WebSite:
Web Info:
Contact: lwoitowi@telusplanet.net
Date: Fri, Jan 14, 2000 at 22:19:15 (EST)
Comments: Our daughter Shelby was born last Apr 27, 1999
with pffd of her left leg. To this point we have been to Alberta Childrens
Hospital in Calgary and the Shriners Hospital in Spokane. They both have
said the same thing,to either have the van nes or amputation of her foot.
Come Apr we have an appointment with Dr. Paley. At this time she is not yet
able to sit by herself without falling over or even trying to do any type
of mobility with her upper part of her body. I work every day with her but
she can be very stubborn at times. I am not sure if I am expecting to much
to soon or not. Anyone with some advice would be greatly accepted. Hope to
hear from someone soon. Thanks:
|
Visitor: Tim & Lorrie Woitowich
Reference: searching for info on pffd
Location: Medicine Hat, Alberta Canada
WebSite:
Web Info:
Contact: lwoitowi@telusplanet.net
Date: Fri, Jan 14, 2000 at 22:19:11 (EST)
Comments: Our daughter Shelby was born last Apr 27, 1999
with pffd of her left leg. To this point we have been to Alberta Childrens
Hospital in Calgary and the Shriners Hospital in Spokane. They both have
said the same thing,to either have the van nes or amputation of her foot.
Come Apr we have an appointment with Dr. Paley. At this time she is not yet
able to sit by herself without falling over or even trying to do any type
of mobility with her upper part of her body. I work every day with her but
she can be very stubborn at times. I am not sure if I am expecting to much
to soon or not. Anyone with some advice would be greatly accepted. Hope to
hear from someone soon. Thanks:
|
Visitor: Tim & Lorrie Woitowich
Reference:
Location: Medicine Hat, Alberta Canada
WebSite:
Web Info:
Contact:
Date: Fri, Jan 14, 2000 at 22:04:38 (EST)
Comments: No comment at this time.....
|
Visitor: Sydney
Reference: My granddaughter has been diagnosed PFFD
Location: Texas, USA
WebSite:
Web Info:
Contact: wmwisch@flash.net
Date: Wed, Jan 12, 2000 at 21:35:24 (EST)
Comments: No comment at this time.....
|
Visitor: Allison
Reference: duh!!!
Location: NAPL
WebSite:
Web Info:
Contact: aferranti@napl.org
Date: Thurs, Dec 30, 1999 at 12:08:47 (EST)
Comments: No comment at this time.....
|
Visitor: Greg Adolphson
Reference: Mikey
Location: Ameritech
WebSite:
Web Info:
Contact: adolphsons@hotmail.com
Date: Wed, Dec 22, 1999 at 13:58:51 (EST)
Visitor: Sharon Leger
Reference: search engine yahoo
Location: Crockett, Tx
WebSite:
Web Info:
Contact: Sharon_Leger@Yahoo.com
Date: Sat, Nov 27, 1999 at 05:36:21 (EST)
Comments: No comment at this time.....
|
Visitor: Jennifer Dockum
Reference: Previous visit
Location: Hanover, Virginia
WebSite:
Web Info:
Contact: jjadockum@cs.com
Date: Fri, Nov 19, 1999 at 17:53:53 (EST)
Comments: Hello everyone, it has been awhile. We have
a 10 month old daughter named Allie who has been diagnosed with PFFD. She
is being treated by Dr. Hertzenburg in Maryland. She was just recently fitted
with her first prosthesis, which really just looks like her second foot.
She is having trouble keeping it on her leg, even when we have it strapped
as tight as it will go. Did anyone else have this problem? She is scheduled
to have her first surgery this coming summer to fix her ankle and maybe get
some length out of her tibia, before her first lengthening. Thanks for this
website.
|
Visitor: Cindy Hussey
Reference: Been here before
Location: Rhode Island
WebSite:
Web Info:
Contact: CindyLou1970@aol.com
Date: Fri, Nov 12, 1999 at 14:25:21 (EST)
Comments: Just dropping in to say hi. Haven't written
in a while. Branden's just over two now- 26 months to be exact. He is finally
starting to attempt walking. He's pulling up on all the furniture and is
trying to cruise, but not quite getting that yet. The other day he was standing
straight up from a sitting position on the couch. Every time he would to
that he fell right over. It was really fun watching his determination. Love
to hear from some of you guys once in a while. Hugs to all the kiddos Cindy
|
Visitor: Carol Buffi
Reference:
Location: Utah
WebSite:
Web Info:
Contact: buffce@hotmail.com
Date: Fri, Nov 12, 1999 at 02:38:23 (EST)
Comments: My 5 yr old daughter will be having her first
legthening surgery with an Ilizarov device in about one week. I wish I had
found this Web site sooner. I need more info and advise on what to expect
and how to help my daughter.
|
Visitor: Laura Johnson
Reference: browsing
Location: Madison, SD
WebSite:
Web Info:
Contact: Johnson5@hcpd.com
Date: Thurs, Nov 04, 1999 at 00:32:57 (EST)
Comments: Sorry, I apparently left off 1/2 my email address.
Anyways, after reading many of these entries, I am just, well, overwhelmed!
(I use the word a lot!) We just got back from our first visit with Dr. Paley
on Sept. 28. It was just so nice to be around other parents who have been
through this. I saw many children, a few even around the same age as our
18 month old, Hailey, who looked wonderful and HAPPY! I was told so many
horror stories by the Shriners that I was a little worried to say the least.
It's funny how I was so mad at God (?) for a while for doing this to my precious
baby, but now I thank him every day for giving me this wonderful person.
She has just taught us and everyone we know so much.
|
Visitor: Laura Johnson
Reference:
Location: Madison, SD
WebSite:
Web Info:
Contact: johnson5.com
Date: Thurs, Nov 04, 1999 at 00:09:17 (EST)
Comments: Our 18 month old daughter has PFFD. It has
definitely been such an overwhelming experience, to say the least.
|
Visitor: Sue Walker
Reference: nurses in hospital found you after Keagan's birth
Location: Junau, Alaska
WebSite:
Web Info:
Contact: eviesmom@aol.com
Date: Wed, Nov 03, 1999 at 17:13:36 (EST)
Comments: Here's an update on our son Keagan's progress.
He just turned one year old on Oct 17. He has unilateral PFFD, left leg,
either Aitkin A or B. Two weeks ago we had his x-rays taken and sent to Dr.
Hertzenberg at MLLC and are awaiting THE PLAN for his lengthenings. He's
now got a 5 to 6 cm difference, but is walking a few steps with the aid of
a 4cm shoe lift on his little Nike's - or rather - is walking a few steps
with or without his lift, which seems to make little difference to him. He
is also climbing at an astonishing rate! You see, it is easy to climb is
you only have to get your short leg up first, so the other day I found him
ON TOP of the dining room table, standing up and gabbling away so happy for
himself. We are continuing to be amazed at how well he is doing and how little
the PFFD affects him. Hopefully we soon will know whether he needs any surgery
to correct coxa vera or any psuedoarthrosis prior to lengthening, or if he
can have these defects (we don't know yet if he has these problems) corrected
at the same time as the first lengthening. There still is no sign of a patella
on the affected leg, which we are told isn't much of an issue. His knee
flexibility is great and the hip seems ok, perhaps mildly displastic, but
with a femoral head and acetabulum. We were especially happy to find that
our local ortho surgeon trained under Dr. Hertzenberg when he was a resident
- so they know each other, and we feeel this will improve communications
for this long-distance effort. Sue, Vic, Evelyn and Keagan Walker
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention
Location: Maple Grove, MN....USA
WebSite:
Web Info:
Contact: Grimbold@Aol.com
Date: Tuesday, Nov 02, 1999 at 23:52:44 (EST)
Comments: Dear Everyone, Hello from Minnesota!!!!!!!!!
Sorry we haven't written in a while, but when you have a 4 year old, and
a 2 year old, you become very old!!!!! Anyway, we just wanted to drop a note
telling you all how great McKenna is doing!!! We had both her hip, and thigh
bone repaired in May, and since then all has gone very well. Now McKenna
uses a new brace that has built in ankle, to help her to get used to using
hers. We have noticed that since the surgery she has much improved mobility,
and balance. One of the best parts was that before the surgery she couldn't
lift her shorter leg to her chest, as it was bent, and twisted backwards,
so forward movement wasn't possible. Now that we have had the bend and twist
fixed, she lifts both legs to her chest, and rolls around. McKenna is now
about 2.5 years old, and we plan to be in Baltimore to see Dr. Paley for
a checkup around some time in Feb. I cannot thank this website enough for
giving us the courage to do what the doctors here in Minnesota said wasn't
possible. Also, we want to thank all of you who have written, and called
to give us support durring the early days. We hope that thru our experiences
we can return the favor. Anyway, thanks so much to all of you, and God
Bless!!!!!!!!! Sincerely, Chuck, Karla, Dylan & McKenna
|
Visitor: Tracey Arnold
Reference:
Location: PA.
WebSite:
Web Info:
Contact: arnoldin@hotmail.com
Date: Tuesday, Nov 02, 1999 at 07:34:55 (EST)
Comments: Thanks to everyone who has kept in touch! Our
son has just recently completed his Van Nes Rotation and is doing great.
He broke the (same) ankle a few weeks ago from a fall, but was up and rollin'
again in just two weeks. If anyone wants to talk about the Van Nes, just
drop me a line!
|
Visitor: Peter Lindkvist
Reference:
Location: Roskilde - Denmark
WebSite:
Web Info:
Contact: pelind@post9.tele.dk
Date: Mon, Nov 01, 1999 at 17:03:22 (EST)
Comments: Hallo everyone! Here is a little update on
Christian (2.5 years). He is an active boy doing, what a boy at his age wants
to do. He has a platform prosthesis (the second one), and he plays football,
drives bicycle and try to run as fast as possible in the opposite direction
when we ask him to come. We have visited the university hospital several
times during the last 2 years and at the latest x-ray examination it seems,
that it is possible to do the lengthening on Christians leg. It is almost
clear that he has no patella, but the doctor is quite pleased anyway. Due
to a slow growth of his left femur and hip, the doctor adviced us to wait
some years with the first operation. We are planning a vacation in USA, so
maybe it will be a good idea to see Dr. Paley and ask for a second oppinion.
Time will show. Finally I will send a little regard to all the new parents.
Try to look forward and enjoy your children. For us it has been a big joy
to see our christian grow, to see how a little human being is growing forward
and it is no longer the leg that fills it all. It becomes daily life that
he says Dad - leg on or bare foot. For him it is just so - and no question
is asked. We send the best whishes from Christian, Sofie, Emilie Hanne and
Peter
|
Visitor: Lori Young
Reference: Internet search
Location: Glasston, ND
WebSite:
Web Info:
Contact: ljyoung@polarcomm.com
Date: Sat, Oct 30, 1999 at 02:12:00 (EDT)
Comments: Wonderful site with much information. When
my daughter was born 8 years ago, she was given term caudal regression. It
wasn't until the past year or so that PFFD was used in regard to her. She
is uni-lateral on the left side. Her natural foot is at about knee level
compared to her right. She has adapted very well to this, and now has a bendy
leg for the left side. (they were able to put in a knee between her natural
foot and her prosthetic one) She recently got out of a spica cast from having
a Salter osteotomy done on her right hip, so she is just learning to walk
again. She is doing very well, considering the only muscles she moved for
6 weeks were in her arms and neck.
|
Visitor: Pat Larabee
Reference: searched pffd
Location: Buxton, Maine
WebSite:
Web Info:
Contact: plarabee@webtv.net
Date: Sun, Oct 17, 1999 at 16:08:19 (EDT)
Comments: Hi Our daughter was born prematurely in Nov
1996. She was born with what was diagnosed as a dislocated hip and club foot,
both on the left side. She had to have surgery to put her hip back in joint
at 9 months of age. She also had to have tendon lengthening done at 11 months
of age to correct the club foot. We have been going on with these diagnoses
for over two years. I have not been comfortable with the doctors diagnoses.
There seems to be too many other factors going on. Upon pressuring him he
took a standing x-ray of her legs and determined that she might have PFFD
due to the fact that the left fibula is bowed and much shorter than the tibia.
There does not appear to be a true leg length discrepancy by x-ray but she
walks with a short leg limp. He just wants to wait and see how she progresses
before giving us any surgical options. He is suggesting waiting until she
is 5 or 6 years old before doing a leg lengthening procedure. Have other
people fallen into this type of problem with their children and if so, do
you agree with the wait and see attitude or should we seek someone willing
to do more aggressive treatment? Thanks for any feedback you can give us.
We really apprciate it.
|
Visitor: Stephen & Gail Jennings
Reference: surfing the net
Location: Napier, New Zealand
WebSite:
Web Info:
Contact: fergusonunited3@atlasmail.com
Date: Sat, Oct 16, 1999 at 04:25:51 (EDT)
Comments: We have a 3 year old son Tyler with PFFD and
Ulna Hemimelia (Upper limb deformaties) affecting both arms. We have had
a Symes Amputation done when he was 2 & 1/2 years old. Tyler is doing
really well. He got his first prosthesis at 6 months old, and was walking
at 21 months. We hope one day to get a leg with a knee joint that bends.
|
Visitor: Mary Lou LaVallee
Reference: searched under pffd in yahoo
Location: Saskatchewan Canada
WebSite:
Web Info:
Contact: lavallee_m_lou@hotmail.com
Date: Fri, Oct 01, 1999 at 13:53:47 (EDT)
Comments: I would just like to talk with any other parent
of a child with pffd. I have been searching for a web page for parents of
pffd children. My daughter is 13 yrs. and we have yet to meet ANYONE (Especially
children) with pffd.
|
Visitor: Donna Fowler
Reference:
Location: Iowa
WebSite:
Web Info:
Contact: fowler@ncn.net
Date: Thurs, Sep 23, 1999 at 23:20:30 (EDT)
Comments: Hi again! It's been a while since I've visited
the page. Thomas will be 6 months old next week. He's had 2 evals at one
hospital and a second opinion at a second hospital. We agree with the doctors
that lengthening is not an option and have chosen to go with the amputation
of his foot now and continue to watch the development of his hip. (Besides
the congenital short femur, he has a clubbed foot twisted behind him, and
fibular hemomelia of the right leg. He also has some minor deformity of his
left foot.)His first surgery should be within the next few months. In the
meantime, he has surpassed his twin sister in size and several stages of
development. His sister does not have PFFD. I'm curious if there are any
other cases of natural twins (or multiples) in which only one child has PFFD.?
Thank you to everyone for this wonderful site!!
|
Visitor: Rita and baby Angel
Reference: Yahoo
Location: Southern California
WebSite:
Web Info:
Contact: raiono@aol.com or raiono@brighton.com
Date: Thurs, Sep 16, 1999 at 01:39:46 (EDT)
Comments: My daughter 'Angel' was born with PFFD about
2 1/2 months ago. I just found your website last week and I am amazed at
all the stories I have read. Reading the stories has definately given me
the strength and courage that I will need to help my daughter thru her trials
and tribulations that lie ahead of her. To date, she has not been treated,
still getting other opinions. We too, were told that amputation would be
the best for her. Because of your stories, I feel ok knowing that it is alright
to wait and take our time with our decisions. Thank you for sharing your
stories, it has definately put hope in hearts for our little 'Angel'. I will
stay in touch and keep you updated with her treatments an progress.
|
Visitor: Michelle Ann Ewer
Reference: My doctor told me about it.
Location: Hamilton, Ontario, Canada
WebSite:
Web Info:
Contact:
Date: Tuesday, Sep 07, 1999 at 16:14:29 (EDT)
Comments: I'm really glad I found you. None of the doctors
here never really talked to me about PFFD. I never knew or had any clue on
how many peaple that have this complicated, confusing and challaging life
as I do. You have givin' me a new look on things, before I thought I was
alone. I was scared of what would happen if the bone that I'm walking on
breaks down and I won't be able to walk on any more. I know that will destroy
me if it does happen. I wanted to know if there was anything that I could
do (meaning some kind of surgury). Now I know I have a chance to SOME-WHAT
IMPROVE my style of living, improve on my self-confidence and glow with
self-esteem. !!!THANK YOU!!!! Just incase you're wondering, I'm 21. I have
blond hair, blue eyes, I'm 5 foot,I have an artificial leg and I have PFFD.
|
Visitor: Ron Pierce
Reference: Referred by a friend.
Location: New York
WebSite:
Web Info:
Contact: RPierce77@aol.com
Date: Thurs, Sep 02, 1999 at 21:37:45 (EDT)
Comments: No comment at this time.....
|
Visitor: pavongchitr
Reference: find out from yahoo
Location: Bangkok of Thailand
WebSite:
Web Info:
Contact: pavongchitr@yahoo.com
Date: Tuesday, Aug 31, 1999 at 10:57:37 (EDT)
Comments: i just looking for one of my friend Nigel de
Ferranti from England your web. is very interesting and i like it very much.
Thanks. Pavongchitr
|
Visitor: Ruth Levine
Reference: regular visitor
Location: Baltimore, MD
WebSite:
Web Info:
Contact: rlevine1@att.net
Date: Sun, Aug 22, 1999 at 20:24:11 (EDT)
Comments: Here's an update on our daughter, Sarah, now
nearly two and a half, who has unilateral PFFD with a large differential
and fibular hemimelia. She just had a pelvic osteotomy and related surgery
at the Maryland Center for Limb Lengthening and Reconstruction, and is doing
extremely well in her spica cast. We are hoping to start lengthening in a
year or so. We'd be delighted to be in touch with other parents at various
points in the journey.
|
Visitor: DeNita Dean
Reference: surfing the net
Location: Pittsburgh, PA
WebSite:
Web Info:
Contact: DeNita@Gateway.Net
Date: Tuesday, Aug 10, 1999 at 18:58:38 (EDT)
Comments: I have a 13 month old son with pffd class D,
he has no hip joint and very short femur and a missing fibula. He is scheduled
to have a supramalleolar osteotomy in Oct, then have the Van Ness procedure
done when he is 2. Dr. Paley in Baltimore will be doing the surgery. Any
information about the Van Ness Rotationplasty would be helpful. Has any one
had the prosthesis that looks like there are two feet on one leg, if so what
kind of clothes (pants) did your child wear. Please anyone email me with
any information.
|
Visitor: Ken Meyer
Reference:
Location: Columbus, Mississippi
WebSite:
Web Info:
Contact: KMJ9@crawdat.com
Date: Sun, Aug 08, 1999 at 11:45:20 (EDT)
Comments: Son with PFFD. Recently seen by Dr. Hertzenburg.
Thanks for all the help and information.
|
Visitor: Linda White
Reference: Infoseek
Location: Ohio
WebSite:
Web Info:
Contact: Raintree1@webtv.net
Date: Fri, Jul 30, 1999 at 11:48:53 (EDT)
Comments: I am currently wearing an ilizarov for a second
time. I am 28 years old and had my left leg lengthened in 1995. I wore my
ilizarov for 11 months. I do not have PFFD, no one has ever been able to
pin point a name for my problem. Now I am haveing my ankle fused. If I can
be of help to anyone feel free to email me. I do not have PFFD, but I am
an ilizarov patient and I know what you are all going through. Keep your
chins up, Linda
|
Visitor: Sue Gawler
Reference: referred by a friend
Location: Maine
WebSite:
Web Info:
Contact: susan.gawler@gte.net
Date: Wed, Jul 28, 1999 at 11:19:49 (EDT)
Comments: thank you for this site. Our daughter has
unilateral PFFD, class A but with a large discrepancy. We are preparing for
lengthening via Ilizarov process starting in late Sep. The connections to
other parents here are most helpful. One suggestion - the article describing
PFFD is way out of date in the Lengthening section. Although the author tacks
on a note at the end of that section, he should really rewrite the whole
thing to be much less misleading. The scary things that make up most of that
section are based on a different and outdated lengthening procedure. It would
be a service to readers to correct this.
|
Visitor: Joann Bilek
Reference:
Location: Michigan
WebSite:
Web Info:
Contact: joann_bilek@spartanstores.com
Date: Tuesday, Jul 20, 1999 at 17:28:49 (EDT)
Comments: Hello everyone. It's been a little while since
I've checked the guest book, though I've had a number of you contact me about
Van Nes and Jamie's story. Just wanted to post a note to let you know I'm
still around and looking for people to help. A message to Lee, who didn't
leave an e-mail address, take a good look at all your options. If you can
have the lengthening done, it's a great option as far as the outcome is
concerned. My niece had the Van Nes Rotation done because lengthening was
not an option for her. She is doing fine. She is walking well with her ankle
as a knee. She bends it when she walks and it boggles the mind how she can
do it, but little kids are such troopers and quick learners that nothing
seems to stop her from doing what she wants. She jumps on a trampoline, swings
herself, climbs. You name it, she'll try it and she's not even 4 years old
yet. A message to Rick. I'll try to contact you sometime this week to discuss
our experience with the Van Nes. It's not nearly as bad as it sounds. I'm
finding that there are more PFFD kids out there than we thought at first
and they all have different options available to them. It's best to rule
out all but the best for your situation, so I would suggest consulting on
all the options. Everyone take care. I promised Mike that I would get Jamie's
page finished soon. Be on the look out.
|
Visitor: Lee Bennett
Reference: YAHOO!
Location: Kentucky
WebSite:
Web Info:
Contact:
Date: Sat, Jul 17, 1999 at 20:14:40 (EDT)
Comments: Hi. I am a 13 year old who has PFFD. I was
born with PFFD in my right leg and my right leg has always been shorter than
my left. Anyway, I am going to Baltimore, Maryland to see Doctor Paley for
an evaluation. I have also had the leg lengthining surgery as well as the
brace called the Illo....Illo..... it's Illo something. My leg is bent at
an an angle and I have trouble straighting it. I need help. Should I A. Have
my leg fused, B. Take the Van-Ness, or C. Try to have my leg fixed by Doctor
Paley. Thanx for your time
|
Visitor: Rick Rhoton
Reference:
Location: Bullhead AZ
WebSite:
Web Info:
Contact: reslrranch@hotmail.com
Date: Tuesday, Jul 06, 1999 at 17:35:22 (EDT)
Comments: Well we went and saw the Shriners talked with
Dr.Armstrong, he knows Dr. Paley and suggested that if we wanted to, to go
talk with Dr.Paley. We are still leaning toward the lengthening but we feel
much better about the Van Ness now. Has anyone out there had this procedure
done? If you have can you let me know how yours is doing, please?
|
Visitor: Richard Rhoton
Reference: searching for info on PFFD
Location: Bullhead City AZ
WebSite:
Web Info:
Contact: reslrranch@hotmail.com
Date: Thurs, Jun 03, 1999 at 14:12:49 (EDT)
Comments: I know that I have already made an entry today
but I wanted to make another entry after reading some of the other entries
in the guest log. Sam has Type A, I think. We have been to se the Shriners
in Salt Lake City UT and they are very hopfull that they can fix his leg.
They gave us some tough options and we would like some of your input please.
They want to fix the angle of the hip first, and then either lengthen the
leg over several years, amputate the foot and fuse the knee and then he would
wear a prosthesis, or turn the ankle around to be the knee and again fuse
the current knee to be the femur. His feet are perfect and his legs are
symetrical from the knee down. We think that we are going with the first
option but we hate to make the wrong decsion can anyone out there help?
|
Visitor: Richard Rhoton
Reference: searching for info on PFFD
Location: Bullhead City AZ
WebSite:
Web Info:
Contact: reslrranch@hotmail.com
Date: Thurs, Jun 03, 1999 at 13:49:30 (EDT)
Comments: My son Sam was born with PFFD adn we were given
some tough options by the doctors. can anyone help?
|
Visitor: Chuck, Karla, Dylan & McKenna
Reference: Divine Intervention...
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: Grimbold@AOL.Com
Date: Sun, May 16, 1999 at 12:11:16 (EDT)
Comments: Dear Readers, Howdy everyone!!! We just returned
from seeing Dr. Paley for our first surgery, and all went very well!!! They
used a newer technique to repair the Bend, and also combined that surgery
with a hip repair that will later make lengthening possible. They didn't
use the scaffolding this time, but put a rod inside the thigh bone to keep
it in-line, so no external pins!!!!We will keep you all posted on our progress,
but so far things are going better than expected. Good luck, and God Bless!!!
Sincerely, Chuck, Karla, Dylan & McKenna
|
Visitor: Donna Fowler
Reference: internet search
Location: Iowa
WebSite:
Web Info:
Contact: fowler@ncn.net
Date: Sat, May 15, 1999 at 17:03:15 (EDT)
Comments: I have a six-week old son with PFFD. We had
his first evaluation yesterday and will wait several months for another eval;
lengthening is likely not an option. We would like info from individuals
who have gone to Shriners in Minneapolis, Gillette Childrens Hospital in
St. Paul, and/or University of Iowa Hospitals and Clinics. Our insurance
company is trying to limit where we get him treated. Also would like to network
with parents from Northern Iowa or southern Minnesota. Thanks for the helpful
web page!!
|
Visitor: Robyn Riley
Reference:
Location: New Jersey
WebSite:
Web Info:
Contact: Robyn72@aol.com
Date: Sat, May 15, 1999 at 15:30:59 (EDT)
Comments: My husband and I have just started down the
long road, we just found out our unborn child whom is due Oct 11 1999, has
pffd, we are going to see a specialist in Philly this Fri. I am looking all
over for as much info as i can get my hands on. Plus looking to talk with
parents who can relate to the fears and questions both my husband and I have.
In the past week I feel like I have aged 20 years. I am thankful she is healthy,
but still quite upset there is a problem. After 2 years of trying to get
pregnant, we were blessed with a positive ept test. But were saddened to
hear the news the other day of pffd. If anyone I am still not sure what some
optins are yet, we will find out this week. But I would like to be prepared
with some knowledge, if anyone has any info, or know of any books for us
to read please send some email. Plus I would love to talk with someone, who
can understand my fears, and just relate to what we are going with. Thank
you all.
|
Visitor: Robyn & Chris Riley
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Sat, May 15, 1999 at 12:32:24 (EDT)
Comments: No comment at this time.....
|
Visitor: Tonya Kliewer
Reference: Searched Internet
Location: Benton, Arkansas
WebSite:
Web Info:
Contact: KHenson@aol.com
Date: Wed, May 12, 1999 at 22:34:05 (EDT)
Comments: No comment at this time.....
|
Visitor: Todd, Michelle and Liam Hickey
Reference:
Location: Edmonton, Alberta, Canada
WebSite:
Web Info:
Contact: todd.hickey@savillemail.com
Date: Mon, May 03, 1999 at 00:20:15 (EDT)
Comments: Hi to everyone. Just visiting the PFFD site
for the first time in a long time. Our son Liam was born last Mar (3/25/1998)
with uni-lateral PFFD of the right leg. To improve the medical options available
to our son (and for other reasons) we have moved from the east coast of Canada
(Newfoundland to be exact) to Edmonton, Alberta as of Feb 3 of this year.
My new e-mail address is todd.hickey@savillemail.com for those I was in contact
with before and most certainly anyone new! As always, the great information
from the fantastic people using this page keeps on growing. BTW, Liam now
has his platform prosthesis and we are introducing it slowly to him. He has
been navigating the furniture since about 8 months of age and sometimes finds
the extension to be in his way, but I'm sure that he'll do fine, being the
trooper that he is. We'd love to hear from parents (and kids) who have gone
through this stage before deciding the best path to choose. God bless!
|
Visitor: Jane Curto
Reference: looking for information re: PFFD
Location: Easton, Pa
WebSite:
Web Info:
Contact: jmc2@fast.net
Date: Tuesday, Apr 27, 1999 at 15:59:06 (EDT)
Comments: My son Lamaer was born with PFFD in 1976. It
has been a long road. He is 23 now and has had one lenghtening done by Dr.
Paley. He does not want to have this procedure done again. He is back to
wearing the prostheses. He gets around fairly well, however, is currently
have pain in his foot. Anyone know of any good orthopaedic surgeons in the
eastern PA area that follow this problem. He did go to Shriners in Philadelphia,
but he is too old now. Don't know if we should continue to see Dr. Paley
because he does not want lengthening. Any information would be helpful. Good
Bless.
|
Visitor: Chuck, Karla, Dylan, & McKenna
Reference: Divine Intervention
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: Grimbold@AOL.Com
Date: Tuesday, Apr 20, 1999 at 19:38:40 (EDT)
Comments: Hello Everyone, We want to thank you all for
your support!!! McKenna is going in for her first surgery on May 04, 1999.
We will keep you posted on how things go. Wish us luck!!! Sincerely, Chuck,
Karla, Dylan & McKenna
|
Visitor: Chuck, Karla, Dylan, & McKenna
Reference: Divine Intervention
Location: Maple Grove, MN
WebSite:
Web Info:
Contact: Grimbold@AOL.Com
Date: Tuesday, Apr 20, 1999 at 19:37:06 (EDT)
Comments: No comment at this time.....
|
Visitor: Joann Bilek
Reference: search for pffd
Location: Battle Creek, Michigan
WebSite:
Web Info:
Contact: joann_bilek@spartanstores.com
Date: Thurs, Apr 15, 1999 at 17:42:01 (EDT)
Comments: Hi guys. Thought I'd give a quick update on
Jamie since I haven't had a chance to update her page since her surgery.
She's walking around great on her new bending knee prosthesis, but hasn't
quite figured out that she can bend it like her other leg. She still walks
stiff legged, the way she learned to walk. She knows how to bend it and does
really well when she's jumping on the trampoline. She just doesn't realize
it'll bend just as good when she's walking. The scar healed nicely(as good
as a 12 scar can look), and quite honestly, the foot being backwards doesn't
phase her or anyone who knows and loves her. To all of us, this is normal,
for Jamie. Well, I'll get working on finishing Jamie's page and give more
details, but for now, I wanted to let everyone know that Jamie's doing great.
She's a real trooper.
|
Visitor: Mims and Rebeccah Adams
Reference:
Location: Alabama
WebSite:
Web Info:
Contact: cadams@mindspring.com
Date: Wed, Apr 14, 1999 at 10:29:02 (EDT)
Comments: It has been a long time since I sent an update
on Rebeccah! She is doing great (finally)! She has been in a spica cast the
last month and we are scheduled for removal next Mon. She is praying that
she will have a built up shoe for the first time in her life since she is
6 inches off the ground now. She has worn prosthetic devices up til now.She
had problems with the bone healing so this lengthening took 13 months from
beginning until end and we only gained 4 inches instead of the 6 we hoped
for but what a miracle 4 inches is! We are all looking forward to the break
between lengthenings but Im sure by next spring we will be ready to move
on. I have really enjoyed all the email from Rebeccahs story and appreciate
being able to pass on all we have learned through this experience. I promise
to be better at keeping in touch! Mims and Rebeccah
|
Visitor: Beth Anne Simpson
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Mon, Apr 12, 1999 at 23:06:09 (EDT)
Comments: Hello everyone, I thought that I would update
you all on Michelle's progress. She is starting to run a little bit on her
new Van-Ness prothesis !!!!!!! yea...... Thanks for your support.... Beth
Anne... P.S. To the lady in Crowley that I spoke with at the ball game, I
hope you found our page and It's helpfull.... Email me anytime.....
|
Visitor: GINETTE
Reference:
Location: ENGLAND
WebSite:
Web Info:
Contact: Teppu@tmarlow.swinternet.co.uk
Date: Sat, Apr 10, 1999 at 11:47:19 (EDT)
Comments: HAS ANYONE GOT ANY INFORMATION REGARDING THE
ALBIZZIA NAIL USED AS A METHOD OF LENGTHENING IN TREATING PFFD
|
Visitor: Jesse Bennett
Reference: Search Engine
Location: Louisville, Ky
WebSite:
Web Info:
Contact: jhb@iglou.com
Date: Thurs, Apr 08, 1999 at 22:38:34 (EDT)
Comments: Courious about options that are open for my
thirteen year old son who has had the leg lenghting done but now has another
doctor who wants to do the van ness rotation plasty. Would like to hear from
other people who has or are being faced with this delimena.
|
Visitor: Brittany
Reference: email from Stephen Ferranti
Location:
WebSite:
Web Info:
Contact: bpaige88@hotmail.com
Date: Wed, Apr 07, 1999 at 22:45:38 (EDT)
Visitor: Chuck
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Tuesday, Apr 06, 1999 at 22:40:10 (EDT)
Comments: No comment at this time.....
|
Visitor: Delia Tavares
Reference: Did a search for Limb lengthening
Location: Toronto, Canada
WebSite:
Web Info:
Contact: d.tavares@oecta.edu.on.ca
Date: Tuesday, Mar 30, 1999 at 16:31:36 (EST)
Comments: I have been visiting your site for about a
year now. I would like to say thank you for all the information and help
this site has given me. I have met wonderful people through here that have
listened to me in happy and sad times. My Son Connor will be 5 years old
next month and he had his first lengthening a year ago. Cause of this site
I got to talk to others in the same situation and whom understood all my
fears. It really helped me to get ready for the surgery and now it gives
me hope when I hear from all of you. Connor had 5 surgeries in 5 months cause
of so many complications occured during the lengthening. The outcome was
not what we hoped for him, but, we should be happy that he gained 5 cm. He
is now at approx. 6 cm difference and wears a leg brace and shoe lift. I
find that his leg looks worse now ...... but, the important thing is that
he walks, runs and is HAPPY. Please feel free to contact me if you have any
questions or just need someone to talk to. All the best to all and God Bless.
|
Visitor: Brian Day
Reference:
Location: Raleigh, NC
WebSite:
Web Info:
Contact: brian.day@pobox.com
Date: Thurs, Mar 25, 1999 at 23:50:57 (EST)
Comments: Erin has bilateral PFFD and is 2&3/4 years
old. Her right leg has no femur and her left leg's fermur is incorrectly
angled such that she is in a squatting position when standing. She is scheduled
for surgery on 4/21 to break and pin her femur so that full extension is
posible. Soft tissue release will be done in the hip and knee areas. Dr.
Dror Paley will be doing the surgery in Baltimore. After email requests for
clarification, he explained that he will decide whether to use Ilizarov or
internal pin (for realignment of the femur) during the surgery. She will
be in a 'spica' cast for 6-10 weeks. Dr. Paley says that P.T. will not be
necessary. Does anyone have experience with this sort of femur realignment?
Specifically, we are concerned with how soon she will be able to walk again
(muscle growth, proprioception...). We would like her to start preschool
in Jul (need to commit a downpayment) but are not sure she will be mobile
and re-potty trained by then. Thanks, Brian & Terry Day Brian.Day@pobox.com
919 556-7129
|
Visitor: aunt lisa
Reference:
Location: litchfield
WebSite:
Web Info:
Contact:
Date: Sat, Mar 13, 1999 at 12:03:43 (EST)
Comments: keep up the good work! we lovw you!
|
Visitor: Beth Anne Simpson
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Wed, Mar 03, 1999 at 21:50:55 (EST)
Comments: Hello everyone. Michelle's cast came off yesterday,
and her leg went on... She took off, and is doing well, Beth Anne
|
Visitor: Tricia
Reference:
Location: Texas
WebSite:
Web Info:
Contact: jvaglica@aol.com
Date: Wed, Mar 03, 1999 at 17:56:36 (EST)
Comments: Son Jared born 4/91,pffd left leg,between type
c and d.Had symes amputation at 9 months.Was in prosthesis by 11 months and
walking by 20 months. At six years had surgery to fuse knee to pelvis to
act as a hip joint. Does wonderful!!! Swims, rides bikes, roller blades,
etc.Very pleased with foot and ankle amputation.We are getting new prosthesis
tomorrow from Texas scottish rite hospital that is multi- colored. How exciting!!
Hope I can help any new families that are just taking all of this on.
|
Visitor: jean berry
Reference: My sone, Michael berry, found your site just last week.
Location: bloomsburg PA
WebSite:
Web Info:
Contact: jberry@husky.bloomu.edu
Date: Wed, Mar 03, 1999 at 16:25:30 (EST)
Comments: I just read the right answer about Adam. I
could identify with so many points in her story that I wrote to her just
now. I'm urging my son to write to your website (I know he did an e-mail
last week) to tell his story. He was 23 years old when we found Dr. Paly
and I think his story would give other older children and adults some hope
or options. His e-mail is mikedb@enter.net
|
Visitor: suzanne
Reference:
Location:
WebSite:
Web Info:
Contact:
Date: Sat, Feb 27, 1999 at 06:52:57 (EST)
Comments: No comment at this time.....
|
Visitor: Beth Anne Simpson
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: bblms@aol.com
Date: Thurs, Feb 25, 1999 at 21:19:23 (EST)
Comments: Hello everyone, I just wanted to update you
all about Michelle. As you may know she had the van-nes surgery last Jul.
She was doing great until she fractured her little leg just above the ankle.
She should get her cast off this comming Mon........... Love, Beth Anne p.s.
Hey John, I hope you found this website!!!!
|
Visitor: Tom & Dawn Rause
Reference: email correction
Location: Raleigh, NC
WebSite:
Web Info:
Contact: rause@flash.net
Date: Tuesday, Feb 23, 1999 at 21:22:31 (EST)
Comments: oops! this is our correct email address!
|
Visitor: Dawn & Tom Rause (Jesse Rause)
Reference: Bookmark for PFFD
Location: Raleigh, NC
WebSite:
Web Info:
Contact: trause@flash.net
Date: Tuesday, Feb 23, 1999 at 15:45:44 (EST)
Comments: We signed the guestbook almost 2 years ago
when we first found the website - what a thrill to finally find some info.
about pffd. Our son Jesse is 3 1/2 and has pffd in his left leg. He is getting
ready for his first lengthening surgery with Dr. Paley in Mar. We are very
excited and anxious at the same time. Jesse had a femur osteotomy to reposition
his hip/femur when he was 18 months old and we've been waiting for everything
to heal and be ready for the first lengthening. He is walking with an almost
5 inch shoe lift right now. He hops everywhere (he hates wearing his big
shoe and brace). Right now he wants more than anything to ride a big bike.
We have 4 children under age 8, so life is always crazy around here, but
it sure gives Jesse plenty of inspiration. We have met others with pffd and
know that the only way to get through all that is ahead is with the love,
guidance and moral support from others and lots of faith! Right now our biggest
challenges are how to juggle our family, how long to stay in Baltimore, is
it necessary to stay in Baltimore for therapy and what's best for Jesse.
We'd love to hear from anyone just starting down the pffd road or an experienced
veteran of pffd.
|
Visitor: Ginette Mckenzie
Reference:
Location: ENGLAND
WebSite:
Web Info:
Contact: Teppu@tmarlow.swinternet.co.uk
Date: Sat, Feb 20, 1999 at 07:29:30 (EST)
Comments: My son Michael has pffd I would like to speak
to anyone who has experience of a lenghtening of more than eight inches.
Michaels right foot is level with his left knee does anyone know if a lengthening
to this extent is possible ? Michael is 6 months old Thank you Ginette
|
Visitor: SARA GIBBS
Reference: TYPED IN PFFD
Location: BUFFALO NY
WebSite:
Web Info:
Contact: THEGIBBS@HOTMAIL.COM
Date: Thurs, Feb 18, 1999 at 10:31:02 (EST)
Comments: I WOULD LOVE TO GET IN TOUCH WITH OTHER FAMILIES
WITH A CHILD WHO HAS PFFD. MY DAUGHTER HAS PFFD AND IS GOING TO HAVE HER
FIRST LENGTHING NEXT MONTH!!!!!!!!!!! VERY NERVOUS.
|
Visitor: Mary Clark [Mary Williams Clark MD]
Reference: via I-CAN list
Location: Toledo OH
WebSite:
Web Info:
Contact: mclark@mco.edu
Date: Sun, Feb 14, 1999 at 20:06:37 (EST)
Comments: Thanks for putting my piece from In Motion
onto your info page! I hope people find it helpful. I have read a good deal
of the rest of your 'place' and think you've done a great job. I'll refer
my patients to you. I do think perhaps someone could write about the
non-limb-lengthening approaches to PFFD. They aren't as antiquated as they
have been made to sound, and perhaps an explanation about the mechanical
problems PFFD poses [especially in some of it types] and the reasoning behind
the reconstruction that includes amputation or rotationplasty would help
people understand why some orthopedists do consider and recommend these options.
(I'm not necessarily suggesting I should do this, as my experience on I-CAN
has been that terrific explanations very often come from parents or mentors
on the list.) Anyway, very nice site--congratulations! mary clark
|
Visitor: Melissa Arnold
Reference:
Location: Baltimore
WebSite:
Web Info:
Contact: inch-by-inch@juno.com
Date: Sun, Feb 14, 1999 at 12:44:10 (EST)
Comments: Hi everyone! I just stopped by to see what's
new and to say hello. I don't get any time to write, but I wanted to let
you know everything is going great. We're ready to schedule surgery to remove
Adam's Ilizarov. Then it's two months in a cast and 6 months to a year of
therapy. Then we're done for awhile. Finally we'll have a stretch of time
when we have nothing medical happening. That'll be strange! Hope everything
is going well for all of you. We think of each of you often! Peace to you,
Melissa....Adam's Momma
|
Visitor: Vicki Davis
Reference: Bookmark after my husband searched the web.
Location: Herreid, South Dakota
WebSite:
Web Info:
Contact: prcdrcus@valleytel.net
Date: Thurs, Feb 11, 1999 at 23:15:12 (EST)
Comments: I am writing tonight mainly to correct the
spelling of my name. I mis-spelled it on my message on Jan. 22, 1999. It
should be DAVIS, not DAIS. I check the guestbook at least once a week. I
like reading the new messages to see if there are any that I can send a note
of encouragement or help to. Someday I hope to write Ben's whole story. But
our life if quite full with homeschooling Ben, who is 9, and Hannah, who
is 7, and also having to keep Sarah entertained. She is almost 5 and will
be added to our school next year. As I said, Ben is 9 years old and has PFFD
on his right leg. His discrepancy at last measurement was 8.2 cm. He uses
a shoe lift and has since he was standing as a baby. He also alternates that
with a over-the-leg prosthesis. He has had 2 surgeries within the last 16
months. The first to correct the curvature in the bone and rotate it forward.
The second to remove the metal after the bone was healed. Both were done
successfully and with no complications at Shriner's Hospital in Minneapolis,
Minnesota. We are anticipating his first lengthening within the next 2 years.
They will lengthen 5 cm., allow that to heal for about a year, and then lengthen
another max. of 5 cm. If needed, they will slow growth on the left leg. They
have discussed amputation with us, but we don't think that is feasible (neither
does Ben). The doctor is concerned that too much lengthening could cause
joint (knee) problems and weaken the bone. As our doctor said, I have to
look myself in the mirror, and I would not want to cause anymore damage than
is already there. I respect her views and opinions. We will take a surgery
at a time. Talk to you at a later date. Please feel free to contact us with
any questions or just to chat. Remember that God loves you and your children.
We would never be able to get through all of this without that knowledge
and faith in Him. Take care.
|
Visitor: Frank Gratke
Reference:
Location:
WebSite:
Web Info:
Contact: Gratke@execpc.com
Date: Thurs, Feb 11, 1999 at 11:23:59 (EST)
Comments: corrected email address
|
Visitor: frank gratke
Reference: kevin born 5-5-92 PFFD aiken class d right
Location: Milwaukee,WI
WebSite:
Web Info:
Contact: gratke.execpc.com
Date: Thurs, Feb 11, 1999 at 11:21:13 (EST)
Comments: Kevin, born 5-5-92, aiken class D, Right LEG,Have
decided to wait and see. Have x-rays at Paley's, Shirners, Childreds and
John Hopkins.Believe bone growth stimulators will be the solution.Makes for
a lot easier healing. Believe with there advance the hip,leg and knee can
be made close to normal. Kevin makes school with a brace now!
|
Visitor: Gineete McKenzie
Reference:
Location: www.charitynet.org/~limbassoc
WebSite:
Web Info:
Contact: teppu@tmarlow.swinternet.co.uk
Date: Wed, Feb 10, 1999 at 21:37:02 (EST)
Comments: Ginette has said that all the information you
have kindly sent her so far has been a great help, and she thanks you for
all your support. Ginette is hoping to also contact people in the UK, who
have experience of PFFD. (signed by Gary at Limbless Assoc for Ginette)
|
Visitor: Christy Horton
Reference: searching web @ pffd
Location: Edwardsville, IL
WebSite:
Web Info:
Contact: dch@iw.edwpub.com
Date: Tuesday, Feb 09, 1999 at 12:08:57 (EST)
Comments: This is a great idea I plan to check regularly
for new stories! My daughter was born with pffd to her left leg. It is good
to know we're not alone.
|
Visitor: Ginette McKenzie
Reference:
Location: UK
WebSite:
Web Info:
Contact: Teppu@tmarlow.swinternet.co.uk
Date: Thurs, Feb 04, 1999 at 21:54:48 (EST)
Comments: RE: Michael, aged 6 months My Son Michael has
been born with severe Proximal Focal Femoral Deficiency (PFFD), the suggested
treatment is amputation. Michael’s right thigh is almost missing, his
right knee is level with his left hip and his right foot is level with his
left knee. I would really like to contact anyone who has been born with the
same condition - of any age who would be happy to share their experiences
with me and offer practical advice. I feel this would help Michael and I
greatly. Ginette McKenzie
|
Visitor: Jennifer Dockum
Reference: searched for you
Location: Statesville, N.C.
WebSite:
Web Info:
Contact: jjdockum@i-america.net
Date: Thurs, Feb 04, 1999 at 10:53:34 (EST)
Comments: We gave birth to a daughter, Allie, born 1/11/99
with PFFD. We are trying to find all the information we can to help her.
|
Visitor: Krystine Hilton (Dylon's Momma)
Reference: been here plenty of times before
Location: New York
WebSite:
Web Info:
Contact: hiltonk@hartwick.edu
Date: Sat, Jan 30, 1999 at 00:44:26 (EST)
Comments: Just a quick note very appropriate thought,
it was a year ago today that Dylon started his first lenghthening at Children's
Hospital in Philadelphia. It was a long year but it already seems so long
ago we are pretty much all better. We thought we would check on some of our
friends since we are doing so well. The wounds have all healed and we are
running around quite well again. I hope all is well with all of you especially
the many friends we have made before. Dylon is a true test that these children
really do bounce back. Other than some stiffness in the morning or in the
night he is back to his old self. Talk to you all soon.
|
Visitor: Vicki Dais
Reference: PFFDvsg
Location: Herreid, South Dakota
WebSite:
Web Info:
Contact: prcdrcus@valleytel.net
Date: Fri, Jan 22, 1999 at 00:15:33 (EST)
Comments: Everything I have read so far is very informative.
Some of it scares me, but then I read further and I receive encouragement.
Thank you for taking your time, Mike and Cindy, to make this available to
us. We are currently receiving treatment through Shriner's, but it is nice
to see what other options are out there if necessary.
|
Visitor: Stacy Maxwell
Reference: Searching for help with my son's PFFD
Location: Alaska
WebSite:
Web Info:
Contact: stacymaxwell@hotmail.com
Date: Thurs, Jan 21, 1999 at 20:27:41 (EST)
Comments: My wife and I read the story about Rebeccah,
and had the same reaction when the doctor from the Seattle Childrens clinic
told us that his foot would most likely have to be amputated. He was born
with a perfect little foot....and it's going to stay that way!! This web
site has finally given us some hope about keeping his foot. Thank You so
much and God bless! -Stacy Maxwell & Amanda Lee
|
Visitor: Beth Anne
Reference:
Location:
WebSite:
Web Info:
Contact: BBLMS@AOL.COM
Date: Tuesday, Dec 22, 1998 at 19:35:56 (EST)
Comments: Hello again everyone..... Michelle is doing
great. She is attending pre-school/day care and is wearing her leg all day.
She does take it off during nap-time. Thank you all for your support. I don't
know what we'd do without it............. Beth Anne
|
Visitor: Peter Helson
Reference: Search engine
Location: Australia
WebSite:
Web Info:
Contact: phelson@davidjones.com.au
Date: Mon, Dec 21, 1998 at 02:02:52 (EST)
Comments: My son has PFFD (d.o.b. 6/90) and has had the
Illiazarov lengthening (9.5cm) last year (a horrendous time !) - good to
find a web-site on this at last
|
Visitor: Steve Thompson
Reference: Yahoo
Location: Virginia Beach VA
WebSite:
Web Info:
Contact: javs4@erols.com
Date: Thurs, Dec 17, 1998 at 23:32:01 (EST)
Comments: I was surprised and elated to find this page.
My son who is 3 1/2 will be going through his first procedures next year.
The articles that I've read so far have given me insight into the process
and progress of limb lengthening. I will send my son's story soon.
|
Visitor: Judith Charles
Reference: Internet
Location: Abington Pa.
WebSite:
Web Info:
Contact: judith c @ bell atlantic.net
Date: Tuesday, Dec 15, 1998 at 10:27:37 (EST)
Comments: My friend just had with PFFD She is ten weeks
old and we need info on PFFD. Her name is Lori Hill.
|
Visitor: Sue and Vic Walker
Reference: PFFD search
Location: Junau, Alaska
WebSite:
Web Info:
Contact: VicDVM@aol.com
Date: Mon, Dec 14, 1998 at 01:28:03 (EST)
Comments: We had our first consultation with an ortho
doc on Dec 2 for our son Keagan who was born in Oct with unilateral PFFD.
We saw Dr. Kit Song at Children's Hospital in Seattle. We found out that
Keagan probably has Aitken Category B type PFFD, that he has a fibula, and
that his predicted limb length difference at maturity would be about 15cm
(7 in). He is definately a candidate for limb lengthening, and Dr. Song advocates
two procedures - beginning at age 7, with possible surgery to stabilize the
connection of the femoral head to the shaft and maybe another operation to
stabilize the hip - he feels the acetabulum could become shallow over time.
Suprisingly - shockingly - we found that Keagan had suffered a fracture of
the left femur at about three weeks of age. We were told that this is common
with PFFD and that it could happen again!! Anyone else have this occur???
I was also suprised to hear that no prosthesis was advocated. We were told
that he would crawl and walk without it - on tippy toe and with the long
leg bent. I've heard from others that they had shoe lifts or platform prostheses.
Comments on this would be appreciated! We are thrilled to know that Keagan
will someday have legs of equal length and are now enjoyig his babyhood in
between the crying, endless walking and rocking and thrice nightly nursings.
Every smile makes this all worth it! Thanks to everyone for your support
- best wishes to all - Sue and Vic Walker
|
Visitor: Dee Schick
Reference: web search FFD
Location: Whakatane, New Zealand
WebSite:
Web Info:
Contact: schick@wave.co.nz
Date: Thurs, Dec 10, 1998 at 20:05:28 (EST)
Comments: How absolutely amazing to see this web site
and the support group. Emma is 3 in Jan and has PFFD. She is a twin, and
Zachary is OK. Our doctor here in NZ has been liasing with Dr Paley, and
is hoping to schedule her surgery next year at a time when Mr Paley is in
NZ. The reports that I have read are very encouraging! Thanks and we'll,
no doubt, be in touch.
|
Visitor: Ruth Levine
Reference:
Location: Baltimore
WebSite:
Web Info:
Contact: ruthl@iadb.org
Date: Mon, Dec 07, 1998 at 12:45:40 (EST)
Comments: A quick update on our daughter, Sarah, now
21 months. She's now doing very well with her platform prosthesis, walking
on her own part of the time, and with a little help (for balance) the rest.
The best part is her delight in finally being upright and mobile! We're scheduled
for her first procedure (to correct coxa vara) next summer, and then (hopefully)
we'll start the lengthening at the MCLLR. This site continues to be a major
source of help for us!
|
Visitor: Carrie Stromer
Reference: searching
Location: Indiana
WebSite:
Web Info:
Contact: stromer@csinet.net
Date: Thurs, Dec 03, 1998 at 19:54:07 (EST)
Comments: No comment at this time.....
|
Visitor: Beth Anne Simpson
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: BBLMS@AOL.COM
Date: Tuesday, Dec 01, 1998 at 15:36:43 (EST)
Comments: Hi Everyone, I just wanted to quickley update
you all on Michelle's progress. She received her new bending leg two weeks
ago. She had her first physical therepy on the Mon before Thanksgiving. SHE
WALKED BY HERSELF THE FIRST THEREPY SESSION!!!!!!! What a kid. She is really
doing great. We are off this week of therepy. So, we practiced walking at
the mall today. she is upto about an hour in her new leg. Hopefully, by the
7th of Dec she will be up to 2 1/2 hours at which time she will go for her
last week of therepy. Thanks for everything. Beth Anne
|
Visitor: amanda helgerson-smith
Reference: searching for paraxial fibular hemimelia
Location: columbus georgia
WebSite:
Web Info:
Contact: helgerson_amanda@colstate.edu
Date: Mon, Nov 30, 1998 at 11:35:48 (EST)
Comments: Hi everyone. I just read 'A Puddle of Tears'
and it hit home with me 100%. Many times the only one you can turn to is
HIM. Family and friends cannot understand your pain and are often unable
to deal with their own emotions regarding your child. God has gotten me this
far. I know HE will get me to the finish line strong for my dear daughter,
Jordan Ashleigh Smith. She is nearly fourteen months and will undergo her
first two surgeries in Dec. God bless you all, Amanda Helgerson-Smith
|
Visitor: Tina
Reference: Wanted to learn more
Location: Pennsylvania
WebSite:
Web Info:
Contact: shortyTina@webtv.net
Date: Sat, Nov 21, 1998 at 13:00:48 (EST)
Comments: I am 20 years old and underwent a lengthening
of my right femur at age nine. I had this done at Shriners Hospital in
Philadelphia. I had the external fixator on for about 8 months. Due to
complications, everything went down hill from there. I had 14 operations
to fix that mistake and the doctors mistake. I got my 3 inches that we were
going for, but my bone was too soft to have the fixator taken off. My bone
bent to a 90 degree angle while in a body cast. I had skeletal traction to
fix the bend for 4 months. My bone would only straighten out to 30 degrees.
So, because of that, my length was lost. I've had so many problems. My doctor
broke my leg is surgery where my growth plate is on my right leg. So, my
leg couldn't grow anymore. They had to shorten my other leg then stop the
growth. I have a rod in my left leg. My right leg went out of wack because
of the bend in the femur, so my ankle bent too. I had an osteotomy done and
they took bone from my hip to correct my ankle. My bones just weren't healthy
enough to heal fast. It took a year to heal even with an EBI unit (stimulations
sent through the cast). I just had a pin taken out of my ankle a year ago.
Ten years of hell. I sure am brave, but I get so down sometimes. I just wanted
to speak out. I want to tell everyone what I went through, and I hope that
everyone else's surgeries goes good. No one else deserves to have this happen
to them. I guess I was the unlucky one.
|
Visitor: amanda helgerson-smith
Reference: surfing the web for info...
Location: columbus georgia
WebSite:
Web Info:
Contact: helgerson_amanda.icapp.students.csu
Date: Mon, Nov 16, 1998 at 14:32:35 (EST)
Comments: I am so happy to see a support group for parents
who feel they are all alone. My daughter was born with paraxial fibular hememilia
and is facing her first set of surgeries the Mon prior to Christmas. I wish
there was a group of peers who have faced or are facing the same painful
realities that I am facing. This is the closest I have come so far. I know
that each of you can understand 100% the emotions I face daily knowing that
I must make life changing decisions for my baby being she is too young to
tell me what she feels is best for her.
|
Visitor: Brett Murdock
Reference: Yahoo
Location: South Burlington, Vermont
WebSite:
Web Info:
Contact: schnook123@aol.com
Date: Sun, Nov 08, 1998 at 10:51:15 (EST)
Comments: I am 10 years old and have PFFD in my left
leg. I recently moved to Vermont from New Jersey. I have had one lenthening
procedure done on my lower leg 5 years ago and about to be scheduled for
my next procedure soon. My mom and dad are wondering if anyone has any experience
with the Shriners Hospital in Montreal; good, bad, or otherwise. I am in
the fifth grade and love to play all kinds of sports, especially baseball.
Please contact me with any info or comments. Thanks!!!
|
Visitor: Barbara Doughty
Reference: search
Location: Norwalk, OH
WebSite:
Web Info:
Contact: badoughty@accnorwalk.com
Date: Tuesday, Nov 03, 1998 at 19:59:18 (EST)
Comments: I have been reading notes at this site for
at least a month and it has helped my family deal with the birth of my neice,
Sarah. She was born Jul 17 with bilateral PFFD, although the diagnosis was
not given for about 2 months. Reading your letters has helped my brother
and sister-in-law have great hope for Sarah. She has very short femurs and
clubbed feet which have been casted since she was a week old. She is doing
well. My brother and sister-in-law have been told that she will walk in due
time and that prosthetics are a possibility later. I have contacted a few
names posted at this site and thank you for your answers. We are especially
interested in cases of bilateral PFFD since they are so uncommon.
|
Visitor: Brian & Terry Day
Reference:
Location: Raleigh, NC
WebSite:
Web Info:
Contact: brian.day@mci2ooo.com
Date: Tuesday, Nov 03, 1998 at 12:55:37 (EST)
Comments: Our daughter, Erin had bilateral PFFD and it
is different in each leg. We are planning surgery with Dr. Dror Paley this
spring to realign her only femur.
|
Visitor: Lindkvist
Reference:
Location: Denmark
WebSite:
Web Info:
Contact: pelind@post9.tele.dk
Date: Sat, Oct 31, 1998 at 04:28:22 (EST)
Comments: Hi everyone! Here is a litle update from Denmark.
Christian is now 17 month (PFFD on his left leg), and has a prosthesis,on
wich he now can walk, an enjoy comming around. He is a happy boy, who already
loves cars. In january we are going to the univercity Hospital in Copenhagen
for the next evaluation of his hip, and the possibilities for bone lengthening.
Best wishes from Hanne and Peter.
|
Visitor: BETH ANNE
Reference:
Location: BURLESON, TX
WebSite:
Web Info:
Contact: BBLMS@AOL.COM
Date: Wed, Oct 28, 1998 at 17:00:40 (EST)
Comments: Hi everyone, Michelle's cast came off Oct 12,
1998. We had our first test socket fit today, October 28, 1998. I spoke with
a lady who's little 4 year old boy was affected with pffd. I'm sorry that
I didn't get your name. But I hope you've checked out this web site. Please
email me and let me know that you found us and what you think. bye for now
all. beth anne
|
Visitor: Daniel Guarino
Reference:
Location: Chelmsford, MA
WebSite:
Web Info:
Contact: daniel.guarino@keyport.com
Date: Fri, Oct 23, 1998 at 13:58:16 (EDT)
Comments: No comment at this time.....
|
Visitor: Paul Verkinderen
Reference: via Alta Vista
Location: Belgium, Antwerp
WebSite:
Web Info:
Contact: Paul.Verkinderen@village.uunet.be
Date: Sun, Oct 11, 1998 at 16:54:56 (EDT)
Comments: We have a daughter of 4,5 years (8/4/94) and
she has PFFD (left leg and right arm). Claudia can walkand run, ride a bike,
swim on her own, write with her left hand. She had 2 operations on her right
hand to make it more functional (she had only three fingers). She has a leg
prothese because her leg is about 10 cm shorter. I want some information
about children with the same problems, perhaps in Belgium. My wife was working
as a nurse in the operation room of a hospital while she was pregnant. Are
there some people in the same situation ? Paul & Carmina Verkinderen
|
Visitor: Paul Jackson
Reference: PFFD - research
Location: Upstate NY
WebSite:
Web Info:
Contact: pbj@clarityconnect.com
Date: Sat, Sep 26, 1998 at 23:44:30 (EDT)
Comments: Hello everyone ! I'm glad we are not alone.
My daughter was born w/PFFD in '89, with complications in the hips &
knee. She has had 3 hip surgeries to reconstruct what was not there when
she was born. We started off w/a Dr in NY city first, what a mistake. For
the past 7 years she has gone to Shriners Hospital for Children in Springfield,
Ma. What wonderful people !! They are hesitant to do leg lengthening because
of her other complications. Her doctor did refer us to his good friend Dr.
Herzenberg in Maryland. We went there last year, & he said he can do
it. We now are approaching the time to make a definite decision, when &
where it will be done. That question has been with us since the day she was
born. She is very nervous about going to doctors and hospitals, so trying
to have her buy into this idea is difficult. If anyone has time ( a rare
item these days ) to e-mail us, parents or a child w/pffd, we would love
to hear from you. Thank you. Paul.
|
Visitor: Beth Anne Simpson
Reference:
Location: Burleson, TX
WebSite:
Web Info:
Contact: BBLMS@AOL.COM
Date: Wed, Sep 09, 1998 at 17:22:25 (EDT)
Comments: Hi everyone. We've just had a little set back
with Michelle. She was crying last week at night and not sleeping well. Wed,
she told me that her heel on her little leg hurt and it felt like something
was sharp sticking her. I called Scottish Rite and Fri her hip spika cast
came off and another went on. Her cast was too loose and not helping her
heal. (Michelle had been picking cotton out of it) Her new cast is called
her green Jamie cast, since it is like the one Jamie Miller has. Her little
leg is casted with a cast band around her waist and her big leg is free.
She will be in that cast until Oct 12th. Hopefully, she will be out of her
green Jamie cast at that time. Thanks for all of your prayers Love, Beth
Anne
|
Visitor: Joanne Pichon
Reference: Informed by a health worker
Location: New Zealand
WebSite:
Web Info:
Contact: dpichon@ihug.co.nz
Date: Tuesday, Sep 08, 1998 at 06:17:21 (EDT)
Comments: Quite interesting as I fall into this catagory
and I have an artifical limb
|
Visitor: Joann Bilek
Reference: Internet search
Location: Battle Creek, Michigan
WebSite:
Web Info:
Contact: joann_bilek@spartanstores.com
Date: Mon, Aug 31, 1998 at 10:17:20 (EDT)
Comments: Hi guys, Just thought I'd let the visitors
on the guestbook know how great Jamie is doing. She is quite mobile with
her walker now. She loves to torment her mom by sayingLook mom, no hands!.
What a kid. She itches some, and lets us know when her leg aches so she can
take her medicine. She relies on the Tylenol less and less everyday. She
goes back to Shriner's on Sep 14th and if everything goes great and her x-rays
show healing, the cast is off!!! Can't wait. I'll be in touch and will be
updating Jamie's page on the pffdvsg website soon. Thanks for all of your
e-mails and support.
|
Visitor: Beth Anne Simpson
Reference:
Location: Burleson, TX
WebSite:
Web Info:
Contact: BBLMS@AOL.COM
Date: Thurs, Aug 27, 1998 at 23:03:08 (EDT)
Comments: Hello everyone........ Michelle is still doing
great! She is doing better than I expected. She is scooting herself around
the house and getting up and down off and on beds. She has made me a nerveous
wreck. Her next Scottish Rite appointment is Sep 15th. If the xray shows
a total healing the cast will come off that day. And she will be casted for
her new bending leg. She has only had 3 accidents so far. So, we aren't dealing
with a total stinky cast yet. ha ha Before we know it, she'll be marching
with her friends at pre-school. Beth Anne.......
|
Visitor: Peter Tropf
Reference: Internet-Search
Location: Karlsruhe (Germany)
WebSite:
Web Info:
Contact: Peter.Tropf@t-online.de
Date: Sun, Aug 23, 1998 at 11:25:33 (EDT)
Comments: My daughter has PFFD Type 1. She was born in
Sept. 1996. A Center for PFFD in Germany is in Aschau (Chiemsee). Thanks
for Your labour to help PFFD-patients.
|
Visitor: FALINA ALI
Reference:
Location: TRINIDAD WEST INDIES
WebSite:
Web Info:
Contact: printart@wow.net
Date: Fri, Aug 21, 1998 at 19:35:24 (EDT)
Comments: Fantastic, I intend to visit more often and
maybe if I have a little more time, I will share my story of my daughter
Saeeda (Sidi), who was born with PFFD and had two leg lengthening procedures
done in 1993 and in 1997. The second procedure being successful (she lengthened
over 10 cms.)
|
Visitor: BETH ANNE
Reference:
Location: BURLESON, TEXAS (south of FT.Worth)
WebSite:
Web Info:
Contact: BBLMS@AOL.COM
Date: Mon, Aug 03, 1998 at 10:04:20 (EDT)
Comments: Hi everyone!!!!!! Michelle's surgery went
great!!!!! We brought her home last Fri. She is in a hip spika cast for 6
weeks. Then back to Scottish Rite for a check up and possibly to get the
cast off and start physical therepy. Thank you all for your prayers and emails.
They have ment the world to us. Beth Anne
|
Visitor: Beth Anne
Reference:
Location:
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Fri, Jul 24, 1998 at 13:36:40 (EDT)
Comments: I'm trying to email cindy hussey. however,
I don't have her full email address. Can anyone help?
|
Visitor: Beth Anne
Reference:
Location: Burleson, Texas (south of Ft. Worth)
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Tuesday, Jul 21, 1998 at 21:15:54 (EDT)
Comments: Thank you everyone for all of the support and
prayers. Michelle's surgery is very soon (Tuesday), we are a mess of mixed
emotions. However, we are certain we are doing the best thing for her. When
I explained to Michelle that her foot would be on backwards, she thought
about it for a minute, looked at me, smiled and said COOL! What a kid. We
can all learn exceptance and bravery from our children. God also gives our
special children the personality to strive past what others may call a
disability. She's our little Michelle. God bless you all and keep in touch
Beth Anne
|
Visitor: Beth Anne
Reference:
Location: Burleson, Texas
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Thurs, Jul 16, 1998 at 00:19:19 (EDT)
Comments: Hi everyone, Michelle's Van Nes Surgery will
be Tuesday Jul 28, 1998 at the Dallas Scottish Rite Hospital. Please wish
us luck and keep us in your prayers. P.S. Laura (holly's story) I'm still
trying to get it together to personally write to you. I will.......
|
Visitor: Courtenay LaVallee
Reference: my mom looked up pffd
Location: Timber Bay, Saskatchewan
WebSite:
Web Info:
Contact: timber.learn@sk.sympatico.ca
Date: Mon, Jul 13, 1998 at 22:52:25 (EDT)
Comments: I would like to talk or write to other children
that have PFFD. I am 12 years old.
|
Visitor: Beth Anne Simpson
Reference: netfind and our pals newsletter
Location: Burleson, Texas
WebSite:
Web Info:
Contact: BBLMS@aol.com
Date: Wed, Jul 08, 1998 at 21:41:11 (EDT)
Comments: Hi, our 2nd child Michelle has pffd in her
right leg. She was born in Oct 1993. She will be undergoing the van ness
proceedure in Jul 1998. I would love to hear from other parents that have
elected for this proceedure. I have tried to write to Joann Bileck but her
mail was returned. I'm thrilled to be able to talk to other people regarding
pffd. It helps us not to feel alone. This is a wonderful and very helpful
website. God Bless......
|
Visitor: Donovan Douglas
Reference:
Location: Harrisonburg, Virginia
WebSite:
Web Info:
Contact: donoman@rica.net
Date: Wed, Jun 24, 1998 at 15:32:13 (EDT)
Comments: My e-mail address has changed since the last
time I logged on. Please do not hesitate to contact me if you would like
to comment on stories found at this website that I have written.
|
Visitor: Tracey Arnold
Reference: Link from my page/on line journal
Location: Pennsylvania
WebSite:
Web Info:
Contact: arnoldin@toolcity.net
Date: Wed, Jun 10, 1998 at 16:01:27 (EDT)
Comments: Recently our computer crashed and eliminanted
(sp?) all of the addresses and letters that I recieve several months ago.
Please! If you recall writing to me, send me another letter. Our son isn't
home yet, but I am sure I will need all the support I can get! Tracey Arnold
|
Visitor: Cheryl
Reference: Online Search
Location: Ontario, Canada
WebSite:
Web Info:
Contact: Cheryl.Spearman@MS.PSC-CFP.X400.GC.CA
Date: Thurs, Jun 04, 1998 at 15:14:36 (EDT)
Comments: I am an adult, mother of two, living with pffd.
I've never asked any questions about my disability, until now. I have been
in a period of stability, in terms of prosthetics, for about 12 years (I
basically ignore the physical disability). I receive a new VanNes pros. every
3 years that's about all the time\attention I give pffd. Once I found out
what PFFD stood for, I did an on-line search. This has been very informative.
I did not realize that there was a network of people. I wish this network
was around when I was younger! Thank you!
|
Visitor: Todd & Michelle Hickey
Reference: surfing the 'net for PFFD info
Location: St. John's, Newfoundland, Canada
WebSite:
Web Info:
Contact: todd_hickey@stratos.ca
Date: Tuesday, May 26, 1998 at 23:07:18 (EDT)
Comments: Our beautiful son, Liam, was born Mar 25, 1998
and diagnosed with Unilateral PFFD of the right leg. All indications are
that he has a good hip socket and the knee joint and lower leg look fine.
Looking for info on alternatives for treatment. Would also like to hear from
other parents in Canada with PFFD kids. Thanks for such a fantastic site!
We found this site on the first day home from the hospital during our thirst
for more information on PFFD. We cannot express how much this site has meant
in our early introduction to PFFD. There are a lot of special people out
there!
|
Visitor: Marc Hoffman
Reference: my mom showed me
Location: Boston Area
WebSite:
Web Info:
Contact: mailforden@aol.com
Date: Mon, May 18, 1998 at 21:35:08 (EDT)
Comments: I am 10 years old and I have PFFD in my left
leg. I am 4 foot 5 and my left leg is 6 to 7 inches shorter. I have had many
surgeries since I was 20 months old, but no lengthenings yet. I play baseball
and am really good at rollerblading. I also take karate and am getting my
brown belt in Jun. I have a bike that is customized for my leg. I have a
prosthesis, but I don't wear it all the time. I have a very nice doctor at
Children's Hospital in Boston. If anyone wants to e-mail me to talk about
anything they can. I would like to talk to other kids my age with PFFD.
|
Visitor: meg gross
Reference: superkids
Location: ripon, wisconsin
WebSite:
Web Info:
Contact: mgross@cesa6.k12wi.us
Date: Thurs, May 07, 1998 at 15:53:57 (EDT)
Comments: I just found out I have an address! My first
entry doesn't have this. I really want to talk to someone. My son is also
developmentally delayed and non-verbal. I didn't see the 20/20 show and wondering
what it was about. My son also has problems with his airway and I'm afraid
of the risk of surgury.I am very happy I found you!
|
Visitor: meg gross
Reference:
Location: ripon, wisconsin
WebSite:
Web Info:
Contact:
Date: Thurs, May 07, 1998 at 15:04:05 (EDT)
Comments: I have a 7 year old son with PFFD,Femoral
Hypoplasia-Unusual Facies Syndrome, and a chromosome deletion on 2nd chromosome.
|
Visitor: Denise Hoffman
Reference: yahoo
Location: Boston Area
WebSite:
Web Info:
Contact: mailforden@aol.com
Date: Tuesday, May 05, 1998 at 23:36:01 (EDT)
Comments: My 10 year old son has pffd. His full height
is @54'' with a 7'' discrepancy in left femur. No Van Ness, multiple osteotomies
while awaiting future lengthenings. Would like to share a few things we found
that may help other kids in his condition.
|
Visitor: Linda Sedivy
Reference: searched the internet
Location: Huntington Beach, CA
WebSite:
Web Info:
Contact: rsedivy@aol.com
Date: Wed, Apr 29, 1998 at 15:03:50 (EDT)
Comments: My 9 year old daughter will be going through
the bone lengthening process this summer and we need all the support we can
find.
|
Visitor: Ruth Levine
Reference:
Location: Baltimore, MD
WebSite:
Web Info:
Contact: RUTHL@IADB.ORG
Date: Tuesday, Mar 31, 1998 at 17:29:46 (EST)
Comments: First, a great big thanks to the VSG manager
for this wonderful resource. This site has been a source of information,
inspiration and support since I discovered it last Oct. My one-year-old daughter,
Sarah Michaela, has unilateral (left) PFFD with fibular hemimelia, with a
projected differential of about 10-11 inches. We are fortunate to live in
Baltimore, and so it didn't take long at all after her birth to find Dr.
Herzenberg at the MCLLR, and to decide that (unless we hit an insurmountable
roadblock at some point) we will pursue the lengthening option. She is just
getting fitted with an AFO platform/extension brace tomorrow so she can walk,
which she is eager for; she will start her pre-lengthening surgeries (hip
and knee) in about 1-1.5 years. I would be pleased to be in touch with other
parents (and PFFD kids of all ages) to share experiences. This is a long
journey, and it's great to have some (virtual) friends along the way. I would
be particularly happy to communicate with new parents. The first few weeks/months
can be very difficult emotionally, and maybe talking to someone who has recently
gone through it would be helpful. We would also be happy to provide information
and other support to families coming to Baltimore for evaluation/treatment
at the MCLLR. I will write again to let you-all know how Sarah is progressing.
|
Hotboards Guestbook
Systems
Copyright 1996 - 2000 All Rights Reserved
-Registered-